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NCL Disease

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Family Support

Many groups exist around the world with an interest in Batten disease.

These groups 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 H�tters henhut@vestamt.dk; Educational consultants: Susan Fugger and Kurt Jensen; MD: Dr John �sterg�rd; Psychologist: J�rn Greve

Finland

France

Germany

Ireland

Italy

The Netherlands

Norway

Portugal

  • The Portuguese Association of Lysosomal Diseases. Associa��o Portuguesa das Doen�as do Lisossoma (APL) Av. Defensores de Chaves, 33 - 5�, 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

  • Asociaci�n Pro Ni�os(as) Con Enfermedades Progresivas (Batten), APRONEP Contact: Mr Yamileth Ch�vez Soto, Education Committee Coordinator 75 metros al sur de la F�brica Ne�n Nieto, San Juan de Tib�s, San Jos�, Costa Rica, Tel: +506 236 96 20, Fax: +506 236 96 20

Venezuela

Africa

    South Africa

    Australasia

    Australia

    New Zealand

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