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 - please help us to keep it up to date.

Europe

• The European Agency for Development in Special Needs Education is an independent and self-governing organisation, established by its member countries to act as their platform for collaboration in the field of special needs education. It includes comprehensive lists by country

United Kingdom

• Batten Disease Family Association
  BDFA provides support, information and networking opportunities for the families, carers and professionals who have contact with a child or adult with Batten disease, and promotes research into Batten disease.
• John and Bridie's Batten Disease Charity
  A charity set up to specifically raise money for research into variant late infantile Batten disease
• The Jordan Jay Trust
  A trust set up to specifically raise money for research into the treatment of late infantile Batten disease
• CLIMB - Children Living With Inherited Metabolic Diseases
• seeAbility
• Contact a Family
• GOLD - Global Organisation for Lysosomal Diseases
  An international collaboration of scientific and medical associations, patient groups, and commercial organisations
• Rare Disease UK
  An alliance to develop a national plan to help all families affected by rare diseases in the UK
• Genetic Alliance UK

Belgium

• ContactpuntNCL
  Contact: Dr. Mattheeuws Stefan, Dalstraat 12, 2400 Mol, Tel: +32 14320666, Fax: +32 14320666, stefan.mattheeuws@skynet.be

The Czech Republic

• The Prague NCL Group: Contact: Milan Elleder, MD, PhD, melleder@cesnet.cz

Denmark

• NCL Danmark
  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

Finland

• Finnish Association on Intellectual and Developmental Disabilities (Kehitysvammaliitto)
• Finnish INCL Association (Suomen INCL yhdistys)
• Family Federation (Vaestoliitto) 
  provides genetic counselling
• Finnish Federation of the Visually Impaired (FFVI) (Näkövammaisten Keskusliitto ry) 
  includes NCL consultant Maria Liisa Punkari E-mail: ml.punkari@nkl.fi for Spielmeyer-Jansky Association

France

• Association Vaincre les Maladies Lysosomales

Germany

• NCL-Foundation (NCL-Stiftung)
• German NCL-Group (NCL-Gruppe Deutschland e.V.)
• Caring for others Group (N�chstenliebe e.V.)

Ireland

• Bee for Battens operated by the Saoirse Foundation

Italy

• Italian Association for NCL (Associatione Italiana per la NCL)
• COMETA/A.S.M.E. Associazione Studio Malattie Metaboliche Ereditarie ONLUS

The Netherlands

• Bartimeus (Bartim�us) 
  Bartim�ushage - an organisation that provides care and services for visual and intellectual disability. Contact info@bartimeus.nl
• De Nederlandse Vereniging Batten-Spielmeyer-Vogt (BSV)
• Beat Batten

Norway

• Norwegian NCL Family Association (Norsk Spielmeyer Vogt Forening) 
  Chairman contact Svein Rokne

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

• "Life" Association against child rare illness

Spain

• Ceroidolipofuscinosis
• Asociaci�n Espa�ola de Familias afectadas por Lipofuscinosis

Sweden

• SSVF - Svenska Spielmeyer-Vogt F�reningen supports the parent group for children with Spielmeyer-Vogt disease: F�r�ldragruppen f�r Spielmeyer-Vogt
  Holger Bernhardsson Kajutv�gen 2, 453 30 Lysekil tel: +46 523 149 37; mobile: +46 70 605 66 04; Contact holger.b@swipnet.se
• The Swedish association for the visually impaired (SRF Synskadades Riksf�rbund)

Switzerland

• Retina Suisse (formerly Retinitis pigmentosa-Vereinigung Schweiz)

North America

Canada

• BDSRA Chapter. Contact President: Bev Maxim

USA

• Batten Disease Support and Research Association
• Children's Brain Diseases Foundation
  350 Parnassus Ave, Suite 900, San Fransisco, California 94117, +1 415 566 5402
• Catherine's Hope for a Cure - a site with a focus on adult NCL or Kufs disease
• Beyond Batten Disease

Latin America

Brazil

• Brasilian Batten Disease and Suppport Association (Associação Brasileira Doença de Batten)

Chile

• Servicio de Neuropsiquiatria Infantil, Hospital Clinico Can Borja Arriaran

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

• Contact: Dr Joaqu�n Pe�a, Hospital de Especialidades Pedi�tricas, Maracaibo

Africa

South Africa

• South Africa chapter of BDSRA: President: Pam Jooste, Contact: shanty@lantic.net

Australasia

Australia

• Australian Batten Disease and Support Association

New Zealand

• New Zealand Battens Support Group care of Lysosomal Diseases of New Zealand (LDNZ)

Useful Links

• Lysosomal Disease Network
• GOLD - Global Organsisation for Lysosomal Diseases
• Rare Project incorporating the Children's Rare Disease Network