You and the disease



Leukodystrophy in your everyday life

 

enfantsLeukodystrophy is a rare genetic disease which is serious, progressive, incapacitating and particularly destructive. It profoundly disrupts the lives both of those affected and those close to them.
This is why you will have to approach agencies and services which you may have been totally unaware of until now. Although we cannot hope to answer all your questions here we can provide information to help you understand as completely as possible your rights and obligations as a whole.
The services of the Network of Aid and Information on Leukodystrophies (NAIL) are at your disposal to offer support and respond in the best way possible to your personal situation and requirements.

 

NAIL : Help on a daily basis



Currently located in the European Myelin Centre in Laxou, near Nancy, in France, NAIL carries out one of the essential missions of the ELA: informing and supporting patients affected by leukodystrophy and their families.

Set up in 1995, NAIL offers rigorously accurate, up to date and relevant information on leukodystrophies and therapeutic approaches to them. It promotes exchanges of information and can act as a point of contact with medical professionals. It offers precise documentation on how to deal with all administrative procedures associated with the disease and with disability and is committed to helping families find personalised solutions.

The network is staffed by:
  • A psychologist working from theSaint Vincent de Paul Hospital in Paris. She supports patients and their families and is permanently available to listen to their concerns.
  • A social worker who has multiple responsibilities:

– relieving the everyday material problems of families;
– helping families to improve or maintain their living conditions by offering advice and information and following up administrative procedures associated with disability and illness;
– helping to draw up case notes and records in collaboration with professionals from various specialists in local Disability Resource Centres as well as other external partners;
– approving specific requests for assistance which fall within the ELA’s remit;
– supporting families with any other specific requests.

  •  A scientific coordinator who acts as a link between medical professionals and families by offering up to date, jargon-free information which is relevant to all individual queries.
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