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International Federation for Spina Bifida and Hydrocephalus
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Organisation of the month

RBU, the Swedish Association for Children and Young People with Mobility Impairments

 

Karin Berggren, Eva Toft and Renée Höglin

The Swedish parents’ association, RBU, is an umbrella organisation for families with mainly children and teenagers who have mobility impairments, but it also includes children with social disorders, like ADHD. Among the eight diagnoses that are represented in RBU, spina bifida and hydrocephalus is one.

The national RBU is divided into 29 regional associations and this is where the real practical day-to-day work takes place. Parents meet and support each other, lectures in medical and psycho-social issues are given, local seminars, summer camps and weekend events are arranged. Moreover, the regional branches of RBU lobby with regional decision makers in order to make them focus on member family needs and problems.
Nationally, RBU influences government policies on disability issues, meets with politicians, entertains a whole range of contacts with school authorities, social administrators, law makers, scientists and medical top people.
It also produces leaflets, books and documents about children and young people who have one or more of the eight diagnoses.
Each diagnosis group in RBU has a national committee of three parents. The parents representing spina bifida and hydrocephalus are Eva Toft, leader of the group, Karin Berggren and Renée Höglin. Associated to them and helping them when needed is Mr. Björn Rundström, the original founder of IF in 1978, also its chairman 1979-94, and father of Eva, 47, his daughter with SB.

the dance company GLITTER

The Spina Bifida and/or Hydrocephalus Committee of RBU arranges theme gatherings for member families and professionals on research, practices and treatments concerning people with Spina Bifida and/or Hydrocephalus. The Committee keeps in touch with doctors who influence national policies on how to treat first and secondary effects of Spina Bifida and/or Hydrocephalus. The Committee tries to influence the authorities about the issue of folate enrichment in foods, thereby advocating such a decision, but a final official approval has been postponed several times, due to resistance among leading researchers. The Committee is also involved in an IF project in Tanzania dealing with the catheterization of infants and young children with incontinence caused by spina bifida. RBU also strongly advocates the development of local parents’ associations.

Being an umbrella organisation, however, RBU brings to public attention matters like inclusion in schools, the transport situation, accessibility in both outdoor and indoor surroundings as well as the right to study and work as a young adult, for all our diagnosis groups. RBU being the representative of many diagnoses adds a synergy effect to the advocacy work of RBU.

Karl, on his mother's shoulder

 

 

 

 

 

 

 

 

 

 

 

What seems to be a necessity for the future is to present a life-span perspective  to RBU’s present role as a representative merely for young people with the disabilities included in the association. Now RBU is first and foremost an organisation for children and young people, who, when they become adults, have the possibility to join other umbrella adult disability organisations. Especially children with for instance SB&H and severe cerebral palsy who grow up today would benefit at least medically by being able to stay on within the RBU.

Today many parents of young adults with SB&H would like to see a lifelong perspective to be included in the RBU. Next year national RBU will celebrate its 50th birthday and possibly new times will bring out new needs. RBU has always been in transition and will hopefully be so in future as well.

Contact information

Postal address
RBU
Box 21064
100 31 Stockholm
Sweden
 
Visitors' address:
Hälsingegatan 47, 6tr
 
Telephone: 0046-(0)8-555 931 00
E-mail: info@riks.rbu.se
Internet: www.rbu.se

 

Archive

October, 2004 RBU, the Swedish Association for Children and Young People with Mobility Impairments
September, 2004 Australian Spina Bifida and Hydrocephalus Association
August, 2004 The Turkish Spina Bifida Organisation
July, 2004 Irish Association for Spina Bifida & Hydrocephalus
June, 2004 Organisation of the month -- June
April, 2004 IF organisation of the month -- May

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