IADPO is actively working to establish a broad global alliance of patient organizations representing as many diseases and countries as possible. At the same time, we have also identified the need to establish several patient organization communities representing specific diseases and regions.
IADPO’s communities include:
IADPO has been actively working this year to establish a community of patient organization for atopic eczema patients worldwide. Projects include the launch of AltogetherEczema.org, World Atopic Eczema Day and release of a co-sponsored report on atopic dermatitis with the Economist Intelligence Unit. The lessons we are learning from this community building will be very helpful as we begin to build more disease- and region-specific communities.
GlobalSkin hosted a European Patient Organizations Community meeting in September 2018 in Paris bringing together patient leaders from across Europe to discuss challenges and opportunities currently faced in this region. As 40% of IADPO Members are located in Europe, the objective was to have an open discussion on where opportunities exist to improve advocacy for skin patients in Europe. We invite all European patient organizations to connect with IADPO as we continue to build support programs our European Member Organizations.
IADPO is working with the rare/uncommon and neglected dermatological diseases community to significantly and measurably improve linkages for patient organization leaders; build capacity and coordination of a synchronized strategic approach to improve access to care; stimulate critical research; disseminate critical information; and improve treatment options for patients living with neglected rare or uncommon diseases. One of the key initiatives will be hosting a RareDERM Summit in June 2019 in Milan, Italy.
Patient organizations that provide support to people living with Hidradenitis suppurativa (HS) provide essential services, support, access to information, opportunities to link with other patients and become empowered to speak up for access to care and treatment. This is a disease where patient organizations are currently under-resourced and not well connected to each other, and as such, IADPO is working with this broader community to significantly and measurably improve linkages for patient organization leaders, building capacity and coordination of a synchronized strategic approach to improve access to care, critical information and treatment options for patients.
If your patient organization is interested in getting involved with this important work and connecting with others in your disease-specific or regional space, please contact Shona Fleming.