The "Association d'aide aux enfants atteints de xeroderma pigementosum" (Support association for XP patients) was created in 2008 en Tunisie. "Through our action, we invite nous invitons XP patients and their parents to meet, to support each other, to share advice and information to manage this disease and overcome difficulties", Noomen Hakim, President of "Association d'aide aux enfants atteints de xeroderma pigmentosum".
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
E-Rare (ERA-Net for research programs on rare diseases) is a network of nine partners –public bodies, ministries and research management organisations from eight countries– responsible for the development and management of national/regional research programs on rare diseases. E-Rare is supported by the European Commission under the Sixth Framework Program ERA-Net scheme for a 4-year period (starting June 1st 2006).
The aim of E-Rare is to foster research on rare diseases in Europe.