Summary of WPD activities 2011

 World Psoriasis Day 2011
”Let’s talk about psoriasis – and take action!”
General summary of activities
World Psoriasis Day 2011 is presented by
and supported by
World Psoriasis Day
IFPA Secretariat, Box 5173, SE-121 18 Johanneshov, Sweden
Phone: +46 8 556 109 14 • Fax: +46 8 556 109 19
Web: www.ifpa-pso.org, www.worldpsoriasisday.com, e-mail: [email protected]
World Psoriasis Day
What is World Psoriasis Day?
World Psoriasis Day, October 29, is an annual day specially dedicated to people with psoriasis and/or
psoriatic arthritis.
Conceived by patients for patients, World Psoriasis Day is a truly global event that sets out to give an
international voice to the more than 125 million people with psoriasis/psoriatic arthritis around the world.
Aims and Objectives

Raise awareness about psoriasis.

Encourage healthcare decision makers to give psoriasis suffers better access to the
most appropriate therapies for their condition.

Deliver relevant information and knowledge to interested parties.

Provide a patient voice platform.
Key Communication Messages

Psoriasis and psoriatic arthritis are serious and chronic, non-communicable and disabling diseases

People with psoriasis should have access to appropriate treatments

We are more than 125 million people with psoriasis and we want to be heard

Psoriasis is not contagious, stop stigmatization and discrimination
Concept of World Psoriasis Day 2011
WPD Theme 2011

Let’s talk about psoriasis – and take action
Key Communication Messages

More than 125 million people with psoriasis must be heard

Talk is liberating, action is empowering

We must take action to help those who suffer in silence – get psoriasis on the agenda now

Spread the word - psoriasis is not contagious

You are not alone – millions of voices speaking as one resonate all over the world

Talk & take action – educate yourself for better medical treatment and educate others to eradicate
discrimination
Target groups

Politicians and policy makers

Public

People with psoriasis and psoriatic arthritis

Health care professionals

Media

Schools / Board of Education / Ministry of Education
“Catchphrases” for material (to be completed with info on psoriasis)

We need to talk...

Talk doesn’t cost a thing – so let’s talk!

Actions speak louder than words – so get loud!

Speech is silver, action is golden; or Talking is silver, taking action is golden
Ideas for actions/events

Own website could feature whole interviews with member/s or just “soundbites” (short comments of
just one or very few sentences).

Create own forum for WPD and encourage members to tell their stories.

Use Facebook and other social media actively, especially to reach young people.

Create applications for Facebook, iPhone (and other smartphones) that promote WPD/communicate
the messages (compare with, for instance, the Pink Ribbon campaign – they are usually very good at
this sort of thing).

“Speaker’s corner” – identify public places where you can reach a large audience of passers-by with
info on psoriasis. Show the public that there is no shame in being sick / having psoriasis by asking
members to actively participate.

Arrange talks, seminars, lectures and workshops on psoriasis and living with psoriasis.

Set up telephone “hotline” – give people the possibility to talk to persons with psoriasis, ask
questions, network.

Arrange walks, parades, and such, to spread awareness on psoriasis.

Contact:

Schools, Board of Education, Ministry of Education, youth organizations

Media – local newspapers, TV-stations, radio (especially radio, maybe – “Talk!”)

Politicians, both on local and national level – we do the talking, so they can take
action!

Health care professionals – same here: talk to them, so they can take action!

Blogs- maybe there are bloggers out there that have psoriasis or know someone that
has psoriasis and want to blog about it.

Famous/well known persons that either have psoriasis or are familiar with psoriasis
(maybe through family member, or such) and ask them to become an official
spokesperson and talk about psoriasis in interviews, at events, etc.
Suggested WPD Advocacy actions
“Let's talk about psoriasis and access to healthcare...and take action” 
Access to better healthcare begins with talking to local politicians and national health ministries! 1. Make an appointment with your local politicians and national health ministry 2. Inform them about psoriasis, the healthcare needs (lack of and the need for early diagnosis; safe, affordable and effective treatments) and the economic impacts (disability, loss of work) 3. Inform them about the connection between psoriasis and shared risk factors with other severe Non Communicable Diseases (NCDs) 4. Encourage your national health ministry to put psoriasis on the national NCD healthcare agenda 5. Encourage your national health ministry to bring the burden of psoriasis, as an NCD, to the World Health Organization “Let's talk about psoriasis and leading a healthy lifestyle...and take action” 
Choosing healthy lifestyles lessens the risk of developing other chronic diseases o
See http://www.ncdalliance.org/node/41 for more information on NCDs and common risk factors. Inspiration…
Synonyms for “talk”
o
Communicate, express, inform, discuss, negotiate
Synonyms for “action”
o
Activity, performance, movement, motion, energy, liveliness, vim, vigour, spirit,
vitality, enterprise, initiative, influence, effect, power, force, strength
The WHO Strategy – the global campaign
The goal of the political action is to have psoriasis and psoriatic arthritis, recognized by the World Health
Organization, WHO as a severe chronic, non-communicable disease and include psoriasis in the WHO
strategy for prevention and control of non-communicable diseases.
We are convinced that recognition of psoriasis by WHO will help psoriasis patients to recognize their own
disease and seek treatment, will enable the public to realize psoriasis is not contagious and halt
discriminating behavior, and will facilitate the medical community to properly diagnose and treat the disease.
These small but effective steps are strategies that are low in economic costs but tremendously high in return
and will begin to lift the burden of the disease on more than 125 million people worldwide and allow for a
better quality of life for people with psoriasis.
A 2 step campaign
The first step of the campaign was started in 2008 when several countries contacted their governments with
a petition asking for support addressing psoriasis at the global level in WHO.
In 2009 step 2 of the campaign was launched. The IFPA member associations continued their work of step
one, to address the national politicians to support our campaign towards WHO.
Furthermore IFPA commenced a strategic central approach of WHO by implementing the IFPA World Health
Organization Strategy for Psoriasis Recognition.
The strategy seeks to inform and request the World Health Organization to recognize that psoriasis is a
serious chronic, non communicable, autoimmune disease that affects over 125 million people of all ages and
races, and carries severe physical, mental and socioeconomic burdens.
IFPA has developed several strategies to reach out to WHO, both informally through projects and directly
through contact with WHO national, regional and headquarter representatives and mobilizing psoriasis
stakeholders in a global WHO/World Psoriasis Day campaign.
The WHO approach – a brief of the global political WPD activity
On World Psoriasis Day, Oct 29 2009, IFPA delivered an inclusive packet of information about psoriasis to the
WHO Noncommunicable Diseases and Mental Health Cluster at WHO in Geneva, Switzerland. The packet
included the IFPA report entitled "Psoriasis is a Serious Disease Deserving Global Attention".
The IFPA strategy seeks to inform and request the World Health Organization recognize that psoriasis is a
serious chronic, noncommunicable, autoimmune disease that affects over 125 million people of all ages and
races, and carries severe physical, mental and socioeconomic burdens, including the elevated risk for serious
co-morbid conditions. To support this claim, IFPA included scientific reports on psoriasis that covered the
entire scope of the disease: epidemiology, physical/psychosocial/socioeconomic impacts, and the relationship
with comorbid conditions. In addition, the packet also included a case statement describing the organization
of IFPA, as well as IFPA member reports and summaries of IFPAs main programs, including World Psoriasis
Day concept and activities, and the World Psoriasis and Psoriatic Arthritis Conferences.
In the letter of reply from Assistant Director General Dr. Ala Alwan, WHO congratulates IFPA for its advocacy
activities to increase awareness among patients, the medical community and the general public. WHO also
states that it is evident that psoriasis is a serious chronic noncommunicable disease that has significant
impact on the quality of life of patients. But most important – WHO invites IFPA for discussions about how
implementation of the activities described in the Implementation Plan of the Global Strategy for the
Prevention and Control of Noncommunicable Diseases, endorsed by the Assembly in 2008, can contribute
and support the efforts of IFPA.
In the letter it is also noted that IFPA have been requested to draft a proposal with view to discuss possible
areas within the Implementation Plan where collaboration between IFPA and WHO can take place.
In response to WHO’s request, a draft proposal has been prepared by IFPA EC in cooperation with IFPA
Scientific Advisory Board. The intention by IFPA EC was to invite and gather representatives and key persons
from the leadership of organisations in the psoriasis field e.g., ILDS, EADV, AAD, IPC, GRAPPA, SOLAPSO and
Psoriasis International Network for a round table meeting to present the IFPA WHO Strategy in detail and
together with IFPA Scientific Advisory Board discuss the draft proposal of reply to WHO. This meeting would
have been the ultimate arrangement to allow all the experts from the leading organisations in the psoriasis
field to express their view, advice and valuable observations to the draft proposal.
Unfortunately, the arrangement of the round table meeting has not been possible within the set timeline for
IFPAs promised reply to WHO. The draft proposal and related documents have instead been distributed by email to the leadership representatives of the organisations in the psoriasis and psoriatic arthritis field, to give
the experts and key persons from the leading organisations the opportunity to view and comment the draft
proposal. IFPAs intention herewith was to present a consolidated view of the proposal, reflecting aspects
representing the broad spectra of the global psoriasis movement.
IFPA EC asked the representatives of the organisations to send the consolidated comments, advice and
eventual amendments on the draft proposal to the IFPA Secretariat. The organisations were also encouraged
to support IFPA in this activity by sending a supportive letter from their organisations of the IFPA action and
the proposal of collaboration between IFPA and WHO. The signed letters of support from all the organisations
was then to be enclosed in the final consolidated reply and proposal from IFPA to WHO.
It is with great honour and appreciation that IFPA EC have received exclusively encouragement and support
from all the partner organisations that have been approached for review of the proposal.
The International League of Dermatological Societies (ILDS), European Academy of Dermatology and
Venereology (EADV), American Academy of Dermatology (AAD), International Psoriasis Council (IPC), Group
for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), Sociedad Latinoamericana de
Psoriasis (SOLAPSO) and Psoriasis International Network have given their unanimous endorsement and
ensured their willingness to lend IFPA their expertise.
IFPA are proud of the statements of support provided by IFPAs professional partner organisations who all are
respected and established international and regional associations and societies within the scientific medical
profession and research area of dermatology and rheumatology, all with special dedication and expertise in
the psoriasis and psoriatic arthritis environment. The supportive statements as well as the proposal of
collaboration between IFPA and WHO and related documents will in the near future be published on the IFPA
website were you also will be able to follow the progress of this activity.
IFPA EC wants to direct a special thank you to all the partner organisations that have given IFPA their
important support in this activity for psoriasis recognition.
The consolidated reply to WHO including the proposal and supportive statements was sent to WHO in the end
of February 2010.
In October 2010, Dr. Shanthi Mendis, WHO Coordinator for Chronic Disease Prevention and Management,
suggested that one possible way that IFPA and WHO could collaborate is by means of a psoriasis patient
“self-care” program.
In order to have World Psoriasis Day (WPD) formally recognized by the World Health Organization, the topic
must be proposed to the WHO Executive Board and the World Health Assembly by a National Health Ministry
of a member state. In March 2011, IFPA chose Panama to be the global leader for WPD and in May 2011,
Kathleen Gallant and Silvia Fernandez Barrio (representing IFPA) and Monica de Chapman and Ana Theresa
Mendez (representing the Panama Association) [or should we say “representatives of IFPA and the Fundación
Psoriasis de Panamá”] met with Dr. Felix Bonilla, Secretary General of the Panama Ministry of Health. After a
short discussion, Dr. Bonilla informed IFPA that Panama would take on the role of global leader and will work
to take on the important work to improve the quality of life of people suffering worldwide from psoriasis.
On June 17, IFPA received a formal letter from Dr. Bonilla stating, “the Minister of Health, Dr. Franklin
Vergara, has declared to agree that Panama becomes the leading country for the global campaign to request
WHO /PAHO to recognize psoriasis as a serious, chronic noncommunicable autoimmune disease of high
impact in people’s lives; in addition to ask WHO /PAHO to institute October 29 as the World Psoriasis Day.”
Through a series of meetings, Dr. Bonilla was able to garner the support of the Health Ministries of Central
America and the process currently continues to gather momentum. IFPA and the Fundación Psoriasis de
Panamá will continue to support Dr. Bonilla’s efforts throughout 2012 and beyond.
As psoriasis can have a negative impact psychologically and on social interaction, development and
economics, the IFPA Executive Committee decided in early 2009 that it was critical to have psoriasis included
as a serious disease within the United Nations system [I am not sure how to say this]. Therefore, IFPA
submitted an application to for Consultative Status with the Economic and Social Council (ECOSOC), the
organ of the United Nations that coordinates economic, social, and related work of 14 UN specialized
agencies, including the issues of disability, poverty and social integration. IFPA was pleased to announce in
August 2011 that we received the position of Special Consultative Status. Because of this status, IFPA was
invited to attend the United Nations High-level Meeting (HLM) on Noncommunicable Diseases in September.
IFPA, represented by Lars Ettarp, IFPA President, and Kathleen Gallant, Secretary of the IFPA Executive
Committee and Chairman of IFPA’s Task Force on noncommunicable diseases, joined over 200 other health
and chronic disease NGOs and attended various meetings and events, including the General Assembly where
they witnessed dozens of member states recognize the serious impact of NCDs and make commitments to
prevent and control chronic disease.
During the UN HLM, Lars and Kathleen met many patient advocates representing various deadly chronic
diseases and most were surprised to learn that psoriasis was an immune-mediated systemic inflammatory
disease with often severe psychical, psycho-social and socio-economic impacts. This experience reconfirmed
the need to take every opportunity to “talk about Psoriasis” (the theme of WPD 2011) and the true nature
and impacts of the disease. IFPA was also pleased and honored to make the acquaintance of Dr. Ala Alwan,
WHO Assistant Director General of NCDs and Mental Health, and to further the discussion of psoriasis as a
serious NCD with Dr. Shanthi Mendis, WHO Coordinator for Chronic Disease Prevention and Management.
IFPA plans to continue to work to build successful relationships with WHO in 2012.
World Psoriasis Day Activities
Awareness-raising activities
Psoriasis is a systemic disease with huge impact on people’s lives.
It is important to let people with psoriasis know that they are not alone and raise the profile of this
devastating disease and the misery it can cause. World Psoriasis Day should provide a platform from which
the 'patient voice' can be heard and from which people with psoriasis can be encouraged to speak out about
their needs and wants. World Psoriasis Day should aim to provide information and knowledge to those who are affected by psoriasis/
psoriatic arthritis as well as the general public, in order that people can be better informed about the
condition, develop a better understanding, enabling them to be more confident to speak about it.
The goal is to dispel myths about the condition, such as the mistaken view that psoriasis is contagious.
Awareness raising activities to educate and give information about psoriasis and psoriatic arthritis are of
enormous importance for all groups in the society.
Target groups




Politicians
Public
Health care professionals
Psoriasis community
Global WPD action 2011
At the World Psoriasis Day Supporters Training Meeting in Amsterdam in June 2011, IFPA asked its member
associations to take part in a survey on stigmatization and discrimination (described below).
The purpose of the survey
This survey was carried out by IFPA and its member associations to investigate and map how stigma and
discrimination affect people with psoriatic disease all over the world. The results of the survey can be
presented, in part or in full, to psoriasis stakeholders, to the WHO and UN, policy makers and health care
professionals, as well as the media and public on local, national and global levels.
It is of great importance that IFPA and its members are able to show how this difficult disease impacts its
sufferers both in the private and public domain, and that, in some instances, their human rights are being
violated.
How will the results be presented?
The results of the survey will be presented by IFPA in connection with the 3rd World Psoriasis & Psoriatic
Arthritis Conference in June 2012, as part of its theme – “Psoriasis – a global health challenge”. Parts of the
survey may be presented prior to this. The survey ties into both the theme for WPD 2011: “Let’s talk about
psoriasis - and take action” as well as the theme for WPD and the Conference in 2012: “Psoriasis – a global
health challenge”.
Benefits of the survey – why it is well worth the effort
1.
2.
3.
4.
5.
We can use the information on an international level by presenting the results to the United Nations
and the WHO, strengthening the IFPA Strategy and global campaign for worldwide psoriasis
recognition.
At a national level you can use the information when petitioning Ministries of Health/Social
Affairs/Work and Education, and other policy makers, to improve the conditions for people with
psoriasis in your country.
At a local level these issues can be used as a base for discussions with policy makers, Boards of
Education, business owners and other employers to educate them on the many difficult aspects of
living with psoriasis, and so hopefully creating a better environment for people with psoriasis in
schools and daycare, at the work place, and in both communal and social settings.
At all levels we can use the facts, figures and compelling stories to gain media attention and reach
out with our key communication messages.
Lastly, and most importantly – we give a voice to those who might otherwise go unheard.
Questionnaire
1. Have you ever experienced stigmatization of some kind because of your psoriasis?
Yes
No
Please indicate in which area/s you have experienced stigmatization (several areas may be indicated):
School
Work
Family and social relations
Health care
Public* or private† amenities
If yes, please provide example/s of this in as much detail as possible.
2. Have you ever been discriminated against because of your psoriasis?
Yes
No
Please indicate in which area/s you have experienced discrimination (several areas may be indicated):
School
Work
Family and social relations
Health care
Public* or private† amenities
If yes:
a) Please provide example/s of this
b) Did you or anyone affiliated with you take any action as a result of the discriminating act, such as
legal action, contacting the media, addressing local or national politicians, contacting your local or
national psoriasis association? If yes, please explain what action was taken, by whom, and with what
result (if known at this time).
*Such as communal swimming pool, bath house, recreation area, and other. †Such as café, restaurant, gym, spa, and other. National WPD activities 2011
For World Psoriasis Day 2011 a wide variety of activities took place, everything from seminars to meetings
with politicians and decision makers. Every year the interest and the success of World Psoriasis Day increases
and we are proud to present some example of all the awareness-raising national activities that have been
taking place all over the world. Please see the document “Summary of national activities World Psoriasis Day
2011” for detailed information, which can be downloaded from the IFPA and World Psoriasis Day websites.
Examples of national activities WPD 2011
ARGENTINA
AEPSO - Asociación Civil para el Enfermo de Psoriasis


Urban actions: signature of political petition in the streets, speech bubble photo-shooting and tango on the street.
Political action: meeting with Vice-Minister of Health, Dr. Bustos Villar.
AUSTRALIA
Psoriasis Australia


Free community event in Brisbane with the theme “Living with psoriasis – giving back confidence at the
workplace”. The objective of the event included specific focus on the significant impact psoriasis can have in the
work place. Psoriasis may affect a person´s work and career, potentially limiting opportunities, causing prejudices
and interpersonal problems. As a result, it can contribute to people losing their jobs or being turned down for
posts or promotion.
Regional meetings in similarity to the one in Brisbane were held in Sydney and Melbourne.
BELGIUM
Gipso


Information and distribution of material about psoriasis held at a big shopping mall called “Ville 2”, to reach as
many people as possible and to inform the general public about the disease. This took place on the 29th of
October in Charleroi.
Information as well as distribution of material about psoriasis in several hospitals in Arlon, Bruxelles, Liège on
October the 29th.
Psoriasis Liga Vlaanderen

Participated in the Netherland Association project “Psoriasis and intimacy”.
BRAZIL
Brazil - UNAPSO

Urban actions: in conjunction to WPD, there was live music by the beach, information booths, attendees handing
brochures about psoriasis and awareness walk (Manaus & Sâo Paulo).
CANADA
The Psoriasis Society of Canada

The Psoriasis Society of Canada hosted 5 seminars about psoriasis and there were approximately 40- 50
attendees at each session.
CHILE
CORPSO – Corporación Psoriasis Chile

Meetings were held with National Health authorities and Parliament to include psoriasis in national health plans.
CHINA
China Psoriasis Foundation

“Meet Experts” project in 10 cities together with local dermatologist association. Free lectures and consultations
were offered by over 60 professionals to more than 2000 psoriasis patients.
CZECH REPUBLIC
SPAE - Psoriatic and Atopic Eczema Association Czech Republic

Arranged a range of seminars. The seminars aimed mostly to people suffering from skin diseases, mainly psoriasis
and topic dermatitis. All attendees gained beneficial information about prevention and treatment.
COLOMBIA
FUNDAPSO – Fundación de Psoriasis de Colombia

National event: an interview with a dermatologist from Hospital Universitario la Samaritana Bogota, Dr. Carolina
Cortez, transmitted live by Caracol channel in the noon news.
COSTA RICA
Department of Dermatology, Hospital Nacional de Niños San José, Costa Rica

There were several academic activities about Psoriasis during the Central American and Caribbean Congress of
Dermatology that took place in Costa Rica. Because of the Congress cited above, no specific activity was made
specifically on WPD, but an activity will be implemented next year.
CROATIA
University of Department of Dermatology and Venereology, Clinical Hospital Centre Rijeka

All university departments in Croatia (Zagreb, Rijeka, Split and Osijek) organized an” Open Day” event for
patients with psoriasis. The purpose was to inform patients and their family members about the disease, new
treatment modalities and to give them the opportunity to share experiences with other patients.
DENMARK
Danish Psoriasis Association

WPD event in Odense: A”walk and talk” + a seminar were held. 100 people attended this event.
ECUADOR
FEPSO – Fundación Equatoriana de la Psoriasis

Urban actions: At the WPD there were happenings like a sight-seeing train, live music and folk dancing for the
general public.
EL SALVADOR
PSONUVES – Psoriasis Nueva Vida El Salvador

PSONUVES had conferences and talks at public hospitals, informing and raising awareness about psoriasis.
ESTONIA
Estonian Psoriasis Union

An educational and information day was held with the theme “Let´s talk about psoriasis and act”. Lectures by
dermatologists and rheumatologists concerning metabolic syndrome of psoriasis, psoriasis arthritis and other
diseases of bones and joints. The Estonian Chamber of Disabled People- social subsidies and services for people
suffering from psoriasis. The presentation of Skin-cap products.
FINLAND
Psoriasisliitto ry, The Finnish Psoriasis Association

The Finnish Psoriasis Association opened a special WPD forum for visitors at the web for two weeks. Facebook
turned out to be a more popular form of social media.
FRANCE
APLCP - Assoc. Pour La Lutte Contre Le Psoriasis

Fi du Pso, an awareness campaign that involved these activities: Symposium organised at the French Parliament (
l’Assemblée Nationale ) on October 12, 2011. Special training was given to our delegates (tuition, communication
kit ...). Press conference + the results of IFSOS our national survey were disclosed. A roller skate race was
organised: Tee shirts, quiz, stickers were given to all participants. Awareness campaign in Public Transportation:
Posters were put on billboards (metro, buses…).
GEORGIA
PSO Georgia – Psoriasis Association of Georgia

The first scientific and practical conference was held in Kutaisi, Georgia, initiated by the Psoriasis Association of
Georgia. The attendees (dermatologists from all over Georgia) discussed important issues and plans concerning
actions for psoriasis sufferers. The slogan of this conference was” Let´s talk about psoriasis and take action”. The
conference was broadcasted by Georgian Public Broadcaster (one channel) and regional TV Company named,
Rioni.
GERMANY
Deutscher Psoriasis Bund e.V.

The WPD was celebrated in Germany in all 40 regional associations of the Deutsche Psoriasis Bund e. V. Many did
it in connection with the regional dermatological clinics or regional dermatologists. Papers on psoriasis were
presented to interested patients, in many clinical departments visits to treatment units were offered and
treatment modalities were explained e.g. UV-treatments.
ICELAND
SPOEX - Samtök Psoriasis og Exemsjúklinga

A lecture was held in the Blue lagoon clinic on WPD. Members of the SPOEX board answered questions about the
Icelandic psoriasis and eczema organization, access to treatment and different kinds of treatments.
INDIA
Psoriasis Society of India

WPD was conducted at VMS Hospital, Vadapalani, Chennai – 26. The theme was “Psoriasis can be well controlled,
no fear”. 114 people attended this day, involving both patients and the public.
INDONESIA
Indonesian Psoriasis Care Foundation, (Yayasan Peduli Psoriasis Indonesia, YPPI)

Regional actions: Dr Danang (YPPI President) coordinated distribution of flyers to the public and seminar “Quality
of Life”, in Medan (North Sumatra). And flyer distribution and 2 mini seminars, in Jakarta.
ISRAEL
Israel Psoriasis Association

The WPD was dedicated to patients with psoriasis and psoriasis arthritis. Lectures were presented by medical
experts and the main presentation was given by Prof Arieh Ingber who is the head of Skin Department, at
Hadassah Hospital. The professor is also the chairman of the Association of Skin Doctors in Israel.
JAPAN
Japanese Psoriasis Association

Meetings in eight cities/areas gathering more than 750 delegates.
KENYA
PAK - Psoriasis Association of Kenya

A lecture “Psoriasis – an evolution” was held by the Association of Dermatologists. 40 people attended, including
patient leaders.
KOREA

Article in major newspaper calling on health officials to recognize the serious psychosocial issues and co-morbid
conditions associated with psoriasis.
LITHUANIA
LAD - Lithuanian Association of Dermatovenerologists , LSPP – Lithuanian Society of Psoriatic Patients

Event was held between LAD, LSPP, health politicians and media. Primary focus is to act as a focus for the general
public, health politicians, and patients to raise awareness of the socio-economic impact of psoriasis.
MALAYSIA
PAM – Psoriasis Association of Malaysia

Over 200 psoriasis patients and family members, medical associations and medical practitioners gathered
together for the “We Care” campaign, in conjunction to World Psoriasis Day, in Malaysia.
MEXICO
AMCPSO - Associación Mexicana contra la Psoriasis

The Mexican Association against Psoriasis organized a press conference to promote their National Congress, with
the attendance of 18 media representatives.
NETHERLANDS
Psoriasis Vereniging Nederland

Comic book about the little girl Sneeuwvlokje (“Snowflake”) was published and presented on World Psoriasis Day.
NEW ZEALAND
Southland Psoriasis Association Inc.

Advertisement in most of the newspapers on WPD resulted in over twenty inquires and 3 new members.
NORWAY
NPA - Norwegian Psoriasis Association

Six open meetings about treatment goals on psoriasis were held by the NPF, in 6 different regions in Norway.
Approximately 200 attended.
PANAMA
Fundación de Psoriasis de Panamá

The campaign “Let us talk and move about psoriasis” were launched for the media (TV, Radio and Press), at
Sheraton Hotel, in Panama.
PERU
Psoriasis Perú

Set up meetings with health authorities to include psoriasis in health public plans. This was coordinated and part
of a provided plan of LATINAPSO.
PHILIPPINES
PsorPhil

PsorRocks, a benefit concert, is the latest project of Psoriasis Philippines. PsorPhil advocates for Filipinos with
psoriasis and PsorRocks is its latest attempt to educate and inform the public that it is not contagious. The
message with the concert was to promote, belonging, respect, love and equality to the people that suffer from the
disease and are experiencing discrimination. Psorocks 2011 was supported by the country´s most famous after
bands, for example: Tricia Garcia, UpDharmaDown, Gracenote and 6Cyclemind etc.
PORTUGAL
PSOPortugal – Associacâo Portugesa da Psoríase

There has been broad media coverage of raising awareness about psoriasis and psoriatic arthritis. Information has
been given on several TV shows with people such as representatives from PSOPortugal, dermatologists, doctors
and patients. The amount of viewers of these shows varies from 10.000 – 350.000.
PUERTO RICO
APAPP – Asociacion Puertoriquena de Ayuda al Paciente de Psoriasis

Meeting with sub Secretary of Health, conversation about psoriasis and issues concerning patient treatments. The
Secretary of Health declares October the 29th, World Psoriasis Day, in Puerto Rico.
SCOTLAND
PSALV – Psoriasis Scotland Arthritis Link Volunteers

25-27 October in 2011: Exhibition at the Scottish Parliament to highlight the WPD and the first anniversary of the
introduction of SIGN Clinical Guidelines for the diagnosis and treatment for Psoriasis and Psoriatic Arthritis. PSALV
spoke to many MSPS, including the First Minister, Alex Salmond, Minister for Public Health, Michael Matheson and
various members of the Health Committee. Parliamentary Motion was put down in Chamber.
SINGAPORE
PAS - The Psoriasis Association of Singapore

In conjunction to the WPD an event were held with the theme “WALK WITH ME, Love is more than Skin Deep”.
Participants of the venue were volunteers from PAS, National Skin Center (NSC) and students from the National
Technological University (NTU).
SLOVENIA
Slovene Psoriasis Patients Association

Slovene Psoriasis Patients Association launched disease awareness campaign “Let´s talk about psoriasis and feel
it”. The campaign aimed to educate the Slovenian general public about psoriasis and change the perception of the
disease.
SOUTH AFRICA
SAPSA – South African Psoriasis Association


National coverage: Health promotion in TV program interviews
Regional Coverage: Radio interviews, at the Bush Radio aimed at the youth and Voice of the Cape, were done for
raising awareness.
SPAIN
ACCIÓ Psoriasis

Launching of the results of the international survey about the stigmatization and discrimination of psoriasis
patients.
SWEDEN
Psoriasisförbundet

The campaign “Let´s talk about psoriasis” was launched on WPD. The objective is to raise awareness about the
disease and the psoriasis´s patients. Purpose is to increase knowledge about psoriasis, encourage people to talk
about the disease and how it affects their lives and get acceptance for the severity of the disease. The campaign
will continue during 2012 with several major events and one example is a conference, with the theme, that will be
broadcasted to twenty cities around Sweden where our local sections will arrange activities.
SWITZERLAND
SPVG – Schweizerische Psoriasis & Vitilligo Gesellschaft

In six towns in Switzerland, members of the SPVG held information stalls on the WPD where they discussed with
people and distributed information material. On two stalls, Christina Surer, a famous Swiss female racing driver
and ambassador for psoriasis, was also present.
TANZANIA
PSORATA – Psoriasis Association of Tanzania

PSORATA launched the first branch outside the Commercial Capital of Dar es Salaam, in Zanzibar.
TURKEY
Sedef Hastalan Dayanisma Dernegi

Patient meeting on the Mother of Pearl (meaning also Psoriasis in Turkish) Island. 150 patients attended the
meeting, sharing experiences, feelings and information with each other.
UKRAINE
Ukrainian Psoriasis Association

A “Welcome Day” for patients and their families were held in almost every region in Ukraine.
USA
National Psoriasis Foundation/USA

Focus on getting President Obama to proclaim Oct 29 as WPD. The central task and effort was to collect 5000
signatures on the White House site: https://wwws.whitehouse.gov/petitions#!/petitions.
VENEZUELA
AVEPSO – A
Asociación Ven
nezolana de Ps
soriasis

ban actions: Open
O
air activity and signatture of public petition.
Urb
Doctor: An
nd remember, light is good for psoriasis.
Snowflake: Yes, you sai d that last tim
me, as well.
Bye, Docto
or!
Idiot! I nee
ed something that is good against
a
psoriasis.
(Courtesy of Psoriasis
P
Verenigin g Nederland and the
t
authors.)
Media
The media activities on World Psoriasis Day were full of variety and all over the world huge efforts were
made to gain attention and raise awareness about psoriasis and the need to talk about this, for many
people, unknown disease, and to promote World Psoriasis Day.
In just October 2011 World Psoriasis Day was featured or mentioned on a very large number of online channels, reaching approximately 130 million people worldwide. Examples of media activities
Argentina

An interview with Silvia Fernandez Barrio, Executive Director of AEPSO, was held at Radio FM Cultura.
Information about psoriasis and psoriatic arthritis was the main topic.
Belgium

Press release, and newspaper articles about psoriasis; interviews on radio to announce all the activities from
Gipso for the World Psoriasis Day 2011.
Canada

Advertisements were placed in 28 newspapers for awareness of WPD.
Chile

The president of CORPSO Alejandro Strull was interviewed at a CNN TV show concerning World Psoriasis Day.
Denmark

A press plan was made up and it resulted in several publications involving information about psoriasis, mostly
on the internet but also on Radio and TV.
El Salvador

An interview was made in the TV program Agrape, Channel 8, which highlighted the importance to have
treatment and psychological help to improve the condition for psoriasis sufferers. The TV channel has the
major audience, not only in El Salvador but also in Honduras and Guatemala.
Finland

Radio interview with Mikko von Hertzen (famous musician with psoriasis). Video and radio material was
offered to the media and the result was that: five commercial radio channels played the interview, six web
news pages showed the video in their front pages (among them the two most popular ones in Finland). The
video was also seen in YouTube and in Helsinki Health Fair, where some 45 000 people visited this year.
France

Press coverage in national and local newspapers (62), TV and radio (6).
Japan

Psoriasis Day Event Report on the “Asahi”, the most popular newspaper in Japan (780 million issues a day).
*A PDF file was sent.
Netherlands

A seven-page special on psoriasis was published in the Dutch edition of the daily newspaper Metro. The
theme for the special was “Psoriasis – you don’t die from it, but sometimes you don’t have a life”.
Philippines

Awareness about psoriasis has been broadcasted in media, widely through different articles online. The
circulation and audience figures has varied from 54 000 – 300 000, depending on which day it has been.
Spain

Extensive press coverage of the results from the stigmatization & discrimination survey.
Slovenia

Campaign featured in all major Slovenian Media. On public and commercial TV in prime time, in daily
newspapers and magazines, on radio, on the web and in social media in more than 70 appearances.
Sweden

Affiliates wrote local debate articles regarding access to treatment that was published in local newspapers in
18 regions. A total of 43 articles and broadcast news items were generated during the period.
Tanzania

The ZANZIBAR PSORATA launch was broadcasted in the media all over the United Republic of Tanzania, using
Radio, TV and Newspapers to inform and raise awareness about psoriasis and the work of PSORATA, to the
public.
Ukraine

TV shows (both national and regional) can be seen at:
http://www.youtube.com/watch?v=sabmz9UBt7E)
Most of the participating Psoriasis patient associations around the world gave interviews to TV and radio stations, newspapers and magazines. Important topics were living with psoriasis and the celebration of
World Psoriasis Day. We can clearly see that there is high media interest in the countries where
manifestations and activities were organized. Those countries that had extensive marketing on the web,
sent press releases and were active in advertisement of various kinds also had good media coverage.
Public events are also a high-impact for media coverage.
WPD 20
011 Phottos
Belgium Colom
mbia Finland Francce Sweden
WPD Website
The World Psoriasis Day official website is www.worldpsoriasisday.com. The WPD website works as an
important channel to promote and spread information globally about psoriasis and World Psoriasis day.
In 2011 www.worldpsoriasisday.com was given a complete facelift, to make it even more easily
accessible and recognizable.
External communication channels
By using Facebook, YouTube or other social networks we can reach thousands of individuals in a short
span of time to a minimal cost.
Facebook
www.facebook.com
World Psoriasis Day has its own group on Facebook. The purpose of the group is to raise awareness
about psoriasis and World Psoriasis Day. There is also a World Psoriasis Day badge that Facebook-users
can add to their own profile photos.
YouTube
www.youtube.com
On YouTube a lot of the videos from national WPD events can be found. There are also many other videos
about psoriasis and psoriatic arthritis. The large coverage and the popularity among young people is an
advantage with this social media.
Blogging
Blogging is one of the new ways to communicate. This is a quick way for people to express their views
and start debates. Blogs are often read by many and is considered to have large coverage. Blogging is a
more personal way of drawing attention to World Psoriasis Day and how it is to live with psoriasis.
Global press release, October 29, 2011
WORLD PSORIASIS DAY, OCTOBER 29, 2011
LET’S TALK ABOUT PSORIASIS – AND TAKE ACTION
Millions of people all over the world are being stigmatized and discriminated against because of their disease – it is time to take action and put psoriasis on the agenda now! Psoriasis can be a truly devastating disease, as it not only affects your health but can also have a severe impact on how you live your life. Many people with psoriasis experience social stigmatization and discrimination on a more or less daily basis, in a wide range of settings; at school, at work, at the gym, in public bath houses. In some countries people with psoriasis suffer even more deeply, as they are ostracized, humiliated or even shut out from society when their disease is confused with HIV/AIDS, syphilis or even leprosy. The misconception that psoriasis is an infectious disease, or that a person who has psoriasis isn’t hygienic, is what commonly leads to this isolating behaviour. A vicious cycle Knowing this it isn’t difficult to understand that stigmatization and discrimination can lead to a vicious cycle of lower education, lower income, and sub‐optimal living conditions and health care. Receiving sub‐ standard health care can lead to even larger health problems and complications, which might result in loss of income and even, in some severe cases, life. A lack of understanding and awareness among the public, but also in the health care system and among the ranks of public officials makes it necessary to take action on many levels. Policy makers and community leaders must be made aware of the problems of stigmatization and discrimination; health care providers have to consider all aspects of psoriasis and take a gathered approach on this multi‐faceted disease, and the general public needs to be informed about the facts. Change must come both from the community, and the individual. The IFPA Stigmatization and Discrimination Survey IFPA has asked its 44 member associations to conduct a survey on stigmatization and discrimination in their countries, to highlight where the main problem areas are, and what can be done about them. Preliminary results show, for example, that social stigmatization is a major problem for many young people in school, and that they refrain from taking part in many activities as a result, or are even discouraged to participate. Action needs to be taken so that these young people, and others, do not suffer needlessly because of myths and misconceptions regarding their disease. Results of the survey will be presented at the 3rd World Psoriasis & Psoriatic Arthritis Conference in Stockholm in June 2012. World Psoriasis Day World Psoriasis Day, October 29, is an international event to raise awareness of psoriasis and psoriatic arthritis. With activities on all inhabited continents, it sets out to give people with psoriasis a global voice so that they will be heard and, hopefully, also understood, by health authorities, policy makers and the public. Please visit www.worldpsoriasisday.com to learn more. IFPA The International Federation of Psoriasis Associations, IFPA, is a non‐profit organization made up of psoriasis associations around the world, representing the more than 125 million people who suffer from psoriatic disease. For more information on IFPA, please visit www.ifpa‐pso.org, or contact us at [email protected] or +46 8 556 109 14.