WHO Strategy
Positive progress in IFPA WHO Strategy for Psoriasis Recognition
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IFPA EC are happy to inform you that we have made positive progress in the activity towards WHO.
IFPA have received a letter of reply from Dr. Ala Alwan Assistant Director-General, No communicable Diseases and Mental Health Cluster WHO. The letter was referring to the IFPA World Psoriasis Day global political action to urge the World Health Organization (WHO) to recognize psoriasis as a serious disease on a central level.
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.
Also presented to WHO was an introductory DVD trailer of the new IFPA project Under the Spotlight (UTS), with an invitation to "meet people living with psoriasis", revealing the real life impact of psoriasis over time, by viewing the short videos on the UTS website.
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 WHOs 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 wasthen 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 here on the IFPA website were you also will be able to follow the progress of this activity.
