Family Support
Many groups exist around the world with an interest in Batten disease. These may support families or raise the profile of Batten disease
or raise money for research or other family needs.
Read Jumpstarting research into neglected diseases
for examples of the difference such groups can make to rare diseases. This page provides a list of support groups.
Europe
United Kingdom
Belgium
The Czech Republic
Denmark
- Dansk Spielmeyer-Vogt Forening/Danish NCL Family Association
Chairman contact Merete Staureby; tel: +45 45 83 44 49
NCL Team: Gathers information about NCL, assists families affected by NCL and gives advice to schools, institutions and local authorities
involved in supporting the children and young people with NCL and their families
Social worker and team coordinator: Henriette Hütters henhut@vestamt.dk;
Educational consultants: Susan Fugger and Kurt Jensen; MD: Dr John Řstergĺrd; Psychologist: Jřrn Greve
Finland
France
Germany
Ireland
Italy
The Netherlands
Norway
Portugal
- The Portuguese Association of Lysosomal Diseases. Associaçăo Portuguesa das Doenças do Lisossoma (APL) Av. Defensores de Chaves, 33 - 5ş, 1000 - 111 Lisboa, Portugal. Contact geral@aplisosoma.org
Russia
- Rare disease web site
Contains information for professionals and patients about interregional patients society of lysososomal storage disorders.
E--mail: LSDrussia@yandex.ru,
115478 Moscow, Moskvorechie st 1, Zakharova E.
Serbia
Spain
Sweden
Switzerland
North America
Canada
USA
Latin America
Brazil
Chile
Costa Rica
- Asociación Pro Nińos(as) Con Enfermedades Progresivas (Batten), APRONEP
Contact: Mr Yamileth Chávez Soto, Education Committee Coordinator
75 metros al sur de la Fábrica Neón Nieto, San Juan de Tibás, San José, Costa Rica, Tel: +506 236 96 20, Fax: +506 236 96 20
Venezuela
- Contact: Dr Joaquín Peńa, Hospital de Especialidades Pediátricas, Maracaibo
Africa
South Africa
- South Africa chapter of BDSRA: President: Pam Jooste, Contact: shanty@lantic.net
Australasia
Australia
New Zealand
Useful Links