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Fostering national and regional psoriasis networks

One of the mail goals of the Psoriasis International Network (PIN) is to improve the quality of healthcare for psoriasis patients and their access to quality skin care. As such, PIN tries to encourage the development of national and regional psoriasi networks and provide assistance in their creation. Here below you will find some tips on how to create and animate a national psoriasis group network.

Regional psoriasis networks such as SOLAPSO (Latin American Society of Psoriasis), PsoMaghreb, West-African Psoriasis Group and Arab Psoriasis Network have been created in collaboration with the Psoriasis International Network. PIN also collaborates with PsorAsia-MD.

HOW TO CREATE A NATIONAL PSORIASIS GROUP?

Suggestions made at the Psoriasis International Network founding meeting, November 18, 2005

A national psoriasis group is a task force composed by dermatologists interested in psoriasis, whether from public or private practice, depending on the country.

The psoriasis group may also include rheumatologists, nutritionists, psychiatrists, patient associations, ...

National psoriasis groups develop various activities, such as clinical or therapeutical studies, national and international surveys, national guidelines, discussion on the good use of treatments, yearly national meetings, information to the patients, experience sharing at the Congress of the PIN.

The choice between a more formal or informal structure or type of organization will largely depend on the legal framework and tradition of each country.

Here you can find some examples of how a psoriasis national group can be set up.

On an informal basis: a group of friends that start up a working group on psoriasis

On a formal basis:

  1. contact all dermatologists in your country and survey their interest in being part of a work group on psoriasis
  2. organise a national meeting to discuss the goals of the group, set up the agenda and schedule the actions to take
  3. seek some official recognition and contact the respective national society of dermatology to form a specific psoriasis work group within its structure.

Please notice that in any case, some form of official recognition is useful to obtain proper funding for the envisaged actions.

HOW TO FOSTER AND ANIMATE A NATIONAL PSORIASIS NETWORK?

You may foster your national psoriasis network by:

Setting up outpatient clinics 1 day a week in your department for psoriasis
Support the creation of such clinics in each department of dermatology in your country

  • Link at the national level the consultants in charge of these outpatient clinics to form a national psoriasis network
  • Join the Psoriasis International Network
  • Organise national meetings to exchange on difficult cases, set up nationwide surveys, guidelines, discuss on clinical and therapeutic research projects
  • Provide information and support to local/national psoriasis patient associations

You may animate your national psoriasis network thanks to:

  1. A national website facilitating discussion on difficult cases, clinical or therapeutic research, international collaborations
  2. National or International surveys to know more about patient needs, treatments around the world, ...
  3. National guidelines and discussion on the good use of the treatments to improve the access to quality health car for psoriatic patients
  4. Help to the creation of Patient Associations
  5. Information to the patients
  6. Regular national psoriasis meeting to exchange on psoriasis
  7. Sharing experiences at the Congress of the PIN every 3 years

Fostering dedicated psoriasis outpatient consultations

Thematic consultations are of great usefulness. In order to develop specific care as well as therapeutic and clinical and therapeutic research it is necessary to be able to spend some time with each patient. This is nearly impossible in classical polyvalent outpatient clinics. Thus, it seems very useful to organise specific consultations for psoriasis in each department of dermatology.

The patients suffering from this disease and coming to the polyvalent dermatology clinic get an appointment to the next specific outpatient consultation. By this way, it is possible to talk with the patients, to fill surveys initiated for clinical and therapeutic research projects, to test new drugs and to develop clinical guidelines.

Here is a useful document for those dermatology departments wanting to create dedicated psoriasis outpatient consultations.

Congress of the Psoriasis International Network

  • PSO 2007: 1013 participants from 65 countries, organised by the French Psoriasis Group
  • PSO 2010: 1482 participants from 81 countries, organised by the German Psoriasis Group (see report)
  • PSO 2013: 1508 participants from 88 countries, organised by Psonet European Psoriasis Registry Network (see report)
  • PSO 2016: 7-9 July at Palais des Congrès (Paris), organised by SOLAPSO Latin American Society of Psoriasis

World Map Directory of Psoriasis Medical Resources

This PIN website feature is an interactive world map directory based on the survey "World Listing of Psoriasis Medical Resources for Patients" (insert link to map).

This ongoing survey will serve to identify the availability of the following services in dermatology departments:

  • dedicated outpatient consultations
  • interdisciplinary consultations
  • available treatments
  • therapeutic education
  • collaboration with patient associations

How can dermatologists, GPs and patients use this interactive directory?

  1. Choose a country
  2. Zoom in and choose a pinned dermatology centre
  3. For that centre, you will see:
    • how to get an appointment
    • which specific medical resources are provided to psoriasis patients
    • location and contact information
  4. You can also choose to filter the information by specific medical resources

Surveys & Studies

A main goal of the Psoriasis International Network (PIN) is to engage the network in surveys and clinical and therapeutic research programmes.

Up to date, PIN has carried the following surveys:

  • 2011 survey on the national organisation of psoriasis-related activities: answers from 50 countries
  • 2012 Worldwide Survey on the Use of Methotrexate in the Treatment of Psoriasis (R. Gyulai, Szeged and Pécs Universities): 490 participants from 65 countries ; results published on JEADV
  • 2013-2014 World Listing of Psoriasis Medical Resources for Patients: 260 dermatology centres listed from 57 countries

Symposia

One of the main tasks of the Psoriasis International Network (PIN) is to utilise all opportunities to enhance and harmonise dermatology training in clinical and therapeutic research in the field of psoriasis, by proposing a PIN symposium to selected national and international congresses.

PIN has organised so far the following symposia:

  • 2 symposia on "Clinical and Therapeutic Research in Psoriasis, a worldwide challenge":
    • 1st Latin American Congress of Psoriasis (Dec. 1, 2012)
    • 13th Conference of the Pan-Arab League of Dermatology (Feb 23, 2013)
  • Symposium on "Safety in Psoriasis: the importance of registries" at EADV Congress in Istanbul (Oct 5, 2013)
  • Symposium on "Long term treatment safety and efficacy outcome in psoriasis" at EADV Congress in Amsterdam (Oct 11, 2014)

Collaboration with patient associations

The Psoriasis International Network (PIN) encourages the development of psoriasis patient associations and is available to collaborate with them on any basis they may need. PIN gathers at present around 40 psoriasis patient associations worldwide and collaborates with all the major federations of patient organisations, such as IFPA, EUROPSO, LATINAPSO, and PsorAsia.

PIN also relays information from patient associations around the World Psoriasis Day on October 29th, in order to raise awareness to this serious disease. Likewise, to promote awareness at both national and international level, we share patient associations’ activities, projects and events via our newsletters and "Focus On".

PIN, as an international psoriasis organisation, can also provide support to patient associations by helping them in advocacy efforts and awareness campaigns.

Directory of Psoriasis
Medical Resources

PIN Leaflet



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