A stronger Foundation to fight multiple sclerosis and support patients

A stronger Foundation to fight multiple sclerosis and support patients
A stronger Foundation to fight multiple sclerosis and support patients

Multiple sclerosis, an autoimmune neurodegenerative disease, affects around 130,000 people in France. The disease occurs in young adults, three-quarters of whom are women. Treatments have evolved significantly over the last fifteen years, limiting the progression of the disease, but curative treatments are only at the research stage.

What are the reasons for this merger of three entities?

Two years ago I became president of Arsep, a foundation which supports research against multiple sclerosis. I was asked to think about this connection. Unisep was born from a split with Arsep twenty years ago, and the League was created with the aim of creating a structure to best support patients. Both doctors and patients and caregivers were in favor of a new union. Multiple sclerosis is little known and we need to give it more visibility.

What do you expect?

More effective support for patients, easier fundraising. We have a network of 800 volunteers. We will be able to create a network of expert patients who will be able to sit in state structures, which was not the case until now. We have also created a committee of patients and caregivers, which will be permanently invited to meetings of the medical-scientific committee. Researchers will listen even more closely to patients.

What are your goals ?

Arsep paid 2.5 million per year for research, the objective would be to double this sum. In particular, we need to get closer to businesses. For partnerships but also so that they understand that they can and must adapt to keep people with multiple sclerosis at work. I remind you that 70% are women and that the disease generally occurs in young adults. When I was a business manager, I saw too many employees having to leave their jobs early. This is one of the reasons for my commitment.

Other associations exist. Are you not going to hide them?

There are around fifty associations, often local. We are going to offer them partnerships, to help them or do things together. Others are less specific to multiple sclerosis. For example, the France Handicap association is following us and will have a position on the board of directors.

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