In the field of rare diseases, various organisations have been created to help patients and promote patient care and research.
The referralcentre of the Henri-Mondor Hospital has an agreement with the Neurofibromatosis and Recklinghausen Association (Association Neurofibromatosis et Recklinghausen, ANR), in which Professor Pierre Wolkenstein chairs its scientific committee. It represents mostgroups, finances research, and participates in institutional work such as the drafting of the PNDS.
Other organisations exist on the internet. However, they do not have an agreement with the referral centre.
Recognised as an organisationof public interest since 2004, the ANR, on a 100% voluntary basis, has the following main goals:
- To listen to patients and their loved ones.
- To direct them to the relevant medical teams.
- To inform them of the latest research developments.
- To disseminate information to the medical world, paramedical, and to the general public.
- Fundraising (information and research).
- To support research by participating in its work as well as funding projects.
Created in January 2017 at the initiative of the Neurofibromatosis and Recklinghausen Association, the Cap NF Foundation represents a sustainable and effective tool for fundraising, supporting, and funding researchtothe benefit of thehealthcare community.
It has the following missions:
- To stimulate initiatives in order to improve the diagnosis, prevention, research, treatment, and knowledge of neurofibromatosis type 1, neurofibromatosis type 2, schwannomatosis, Legius syndrome, any segmental form of these diseases, and any other pathology belonging to the group of neurofibromatosis.
- To inform both the general public and the healthcare community about neurofibromatosis by all means of communication.
