There are many different rare diseases, but the challenges are similar for all patients.

It is often a long journey until a diagnosis is reached. In order to obtain information about specialised health care services and therapies, patients must do a lot of research on their own. The topics range from coverage of costs, availability of cross border treatments, responsibility for social, psychlogic and medical care, coordination of outpatient and inpatient care up to issues dealing with autonomy and socio-professional integration.

ALAN is a specialised case manager, counselor and spokesperson for individuals with rare diseases.

Our services include:

• Individual counseling and support in administrative procedures
• Socio-therapeutic aid and psychological counselling for both persons dealing with a rare disease, and their families,
• Research assistance through a national competence center for rare diseases, with a specialised library
• Access to up to date knowledge through conferences and events related to rare diseases
• Networking with specialised institutions, interest groups, national and international associations such as EURORDIS (EURopean Organization for Rare DISeases) and AFM Téléthon (French Association against Myopathies - Téléthon)
• Tailored regular sporting and recreational activities