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SCIENTIFIC BOARD MEETING OF PSORIASIS INTERNATIONAL NETWORK PARIS - FRIDAY JULY 2, 2010

SCIENTIFIC BOARD MEETING OF PSORIASIS INTERNATIONAL NETWORK PARIS - FRIDAY JULY 2, 2010. THANKS FOR YOUR INVALUABLE PARTICIPATION TO THE THIRD MEETING OF THE PSORIASIS INTERNATIONAL NETWORK. THANKS TO YOU IT LOOKS LIKE A SUCCESS!. Under the aegis of the EADV Psoriasis Task Force

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SCIENTIFIC BOARD MEETING OF PSORIASIS INTERNATIONAL NETWORK PARIS - FRIDAY JULY 2, 2010

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  1. SCIENTIFIC BOARD MEETING OF PSORIASIS INTERNATIONAL NETWORK PARIS - FRIDAY JULY 2, 2010

  2. THANKS FOR YOUR INVALUABLE PARTICIPATION TO THE THIRD MEETING OF THE PSORIASIS INTERNATIONAL NETWORK. THANKS TO YOU IT LOOKS LIKE A SUCCESS!

  3. Under the aegis of the EADV Psoriasis Task Force The Psoriasis International Network gathers dermatologists, rheumatologists, scientists, caregivers, patients and families involved in the psoriasis management. It is a tool to develop and promote exchanges and facilitate international collaborations in the field of psoriasis PSORIASIS INTERNATIONAL NETWORKwww.psoriasis-international.org

  4. 44 countries registrered on the website: 29 patients associations + major patient federations (IFPA, EUROPSO and LATINAPSO) 27 medical groups + 18 SOLAPSO countries (Latin American Psoriasis Society) 75 countries participate actively in the Psoriasis International Network: Boards, news exchange, collaborative projects PSORIASIS INTERNATIONAL NETWORKwww.psoriasis-international.org

  5. 3 Boards: Scientific Board: composed by coordinators of the national psoriasis group Advisory Board: permanent body of invited high-level experts (that sees to the ethical and scientific development of the network) Pharmaceutical Board: partner industries committed to the development of clinical and therapeutic research in psoriasis (Today: Pfizer/Wyeth, Novartis pharma, MEDAC) PSORIASIS INTERNATIONAL NETWORKwww.psoriasis-international.org

  6. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org N° of website visits/month:June 10: 22 500

  7. Our link: The Newsletter • No. subscribers: +3400 • Recent Publications on psoriasis • Focus On: highlights of the members’ main activities and projects, articles, collaborative works or any other topic of their interest. • Events: the main events on psoriasis around the world • News from the weboffice, medical groups and patient associations

  8. Send us your email addresses so you can receive the newsletters and Focus On weboffice@psoriasis-international.org

  9. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org Today we have 3 major points to discuss: HOW TO EXPAND THE NETWORK HOW TO ANIMATE THE NETWORK CHOOSE THE COUNTRY RESPONSIBLE FOR THE SCIENTIFIC PROGRAMME OF PSO 2013

  10. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org A. HOW TO EXPAND THE NETWORK ?

  11. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org To identify in each country the chairpersons interested to take in a network on psoriasis Chairpersons usually do not have the time to participate in the daily psoriasis

  12. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org 3. They propose to a young dermatologist to organise in their department 1 day or 1/2 day a week an outpatient clinic on psoriasis. The Chairperson and the young consultant receive the news and the Focus On of Psoriasis International Network

  13. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org • 4. A National Network is built between the departments involved. • This National Network is coordinated in different ways according to the country, sometimes under the umbrella of the National Society of Dermatology • National Psoriasis Networks can include: • Rheumatologists • Nutritionists • Psychiatrists • Patient associations

  14. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org 5. OF GREAT PRACTICAL IMPORTANCE The email addresses of each participant are to be sent to the webmaster of Psoriasis International Network so that all can receive the news and Focus On weboffice@psoriasis-international.org

  15. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org 6. The Country Websites A FREE WEBSITE IN YOUR LANGUAGE CAN BE OFFERD BY THE FOUNDATION IF NEEDED CONNECT THIS WEBSITE OR A PREEXISTING ONE TO THE PSORIASIS INTERNATIONAL WEBSITE

  16. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org • 7. AN IMPORTANT CHOICE: THE COORDINATOR • A GOOD COORDINATOR IS: • RESPONSIBLE FOR A THEMATIC OUTPATIENT CLINIC • ABLE TO SPEND HALF DAY A WEEK FOR THE COORDINATION ACTIVITIES • TRAINED IN CLINICAL AND/OR THERAPEUTIC RESEARCH • ACCEPTED BY OTHERS ON A FRIENDSHIP BASIS • ABLE TO BE THE LINK WITH THE INTERNATIONAL ACTIVITIES OF THE NETWORK

  17. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org B. HOW TO ANIMATE THE NETWORK ?

  18. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org TO ORGANISE THE STRATEGY OF COMMUNICATION AT THE NATIONAL LEVEL FOR DISCUSSING DIFFICULT CASES, MAKING CLINICAL OR THERAPEUTIC RESEARCH, INITIATING INTERNATIONAL COLLABORATIONS …….

  19. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org TO ORGANISE A YEARLY NATIONAL MEETING TO PARTICIPATE IN LOBBYING ACTIONS FOR EXEMPLE TO OBTAIN THE SUPPORT OF EU

  20. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org AROUND THE WORLD THE MAIN ACTIVITIES OF THE NATIONAL PSORIASIS GROUPS ARE: - Clinical or therapeutic studies - Exchanges around difficult cases - National or International surveys - National guidelines - Discussion on the good use of the treatments - Help to the creation of Patients’ Associations - National psoriasis meeting (once a year) - Information to the patients - to share experiences at the International Psoriasis Congress every 3 years

  21. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org A FIRST STEP OF MAJOR IMPORTANCE: TO BUILD A COMMON MINIMAL QUESTIONNAIRE AS A BASIS FOR ANY SURVEY AND PROSPECTIVE STUDIES

  22. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org THE ACTIVITIES OF RESEARCH OF THE NETWORK WILL BE, WHEN POSSIBLE, SPONSORED BY OUR PARTNERS OF THE PHARMACEUTICAL BOARD NOW:PFIZER/WYETH NOVARTIS PHARMA MEDAC

  23. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org • Possible projects • of clinical • or therapeutic research • aiming to be supported by Pharmaceutical Industries partners:

  24. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org • * Characterisation of Psoriasis phenotypes in different part of the World: 6 or more? • * An international register on Psoriasis in Childhood with therapeutic evaluation using a treatment algorythm • * An International register on difficult to treat localisations: • palmo- plantar psoriasis, • palmo-plantar pustular psoriasis • scalp psoriasis • Flexural psoriasis • Nails psoriasis • with therapeutic evaluation using a treatment algorithm

  25. PSORIASIS INTERNATIONAL NETWORK www.psoriasis-international.org • Revalidation of the Pso score • Evaluation of the best strategy of use of Methorexate • Evaluation of the efficacy and the tolerance of the association of low doses of systemic treatments • ……………………………. And many other ones

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