Patient associations

National Spina Bifida and Associated Handicaps Association (ASBH)

The National Spina Bifida and Associated Handicaps Association (ASBH) provides help and support to help people deal with the many problems posed by spina bifida and associated handicaps. It strives to ensure the best possible quality of life and independence. The purpose of the ASBH is to bring together, throughout France, families and individuals concerned or sensitive to the problems posed by neural tube defects and malformations or the consequences of trauma or associated syndromes, in particular forms of spina bifida, hydrocephalus, Chiari syndrome, syringomyelia, tethered cord syndrome and all forms of sphincter incontinence. To this end, the association, chaired by François Haffner, relies on 39 regional contacts and over a hundred volunteers throughout France. Its head office is in Plessis-Trévise (Val-de-Marne, department 94).

In particular, the association offers:

  • A national help and advice service for products adapted to urinary or anal incontinence in France, via technical advisers who can be contacted on 01.45.93.00.44.
  • Information on disability for their members, through a quarterly newsletter and more than a dozen specific guides on disability.
  • Medical equipment at LPPR prices, with no surcharges or advance payments, for continence disorders in France.
  • Allo SB Santé, a platform of volunteer doctors who answer medical questions.

ASBH is invested in supporting and developing research into neural tube defects (NTDs) in general and spina bifida in particular, not forgetting sphincter incontinence. Its main objective is to motivate and finance research programmes selected by its national medical committee.

For more information: Site internet : https://www.spina-bifida.org/

“Scoliose & Partage” association

The Scoliose & Partage association was set up by a group of men and women with scoliosis. Whether they themselves suffer from this pathology or their own entourage, they have learnt to live with their backs, to manage their difference and their difficulties in everyday life.

The association’s main aim is to raise public awareness of the disease, as there is no systematic screening for scoliosis.

The association’s most notable actions are

  • The screening brochure for parents: a brochure has been produced to teach parents to look at their children’s backs themselves.
  • Recognition of adults with ALD ( Long Term Affection)
  • Creation of a national scoliosis screening day on the 1st Saturday in June.
  • Help and support are also provided through a magazine called “Zig Zag”, which is published once a year.
  • Creation of an illustrated booklet entitled “Pasco a une scoliose” (Pasco has scoliosis) to explain scoliosis and its treatment to children.
  • Regular and active participation in medical congresses where the association represents patients.
  • Regular publication of articles in the local and national press to raise awareness of scoliosis.

For more information: Site internet : www.scoliose.org