NCL RESOURCE - A GATEWAY FOR BATTEN DISEASE

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

• 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.
  Recruitment is now underway to develop a multidimensional clinical assessment tool for Batten disease: Batten disease recruitment (pdf file).

• 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, [email protected]

The Czech Republic

• The Prague NCL Group: Contact: Milan Elleder, MD, PhD, [email protected]

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 [email protected]; Educational consultants: Susan Fugger and Kurt Jensen; MD: Dr John Østergård; Psychologist: Jørn Greve

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: [email protected] 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 (Nächstenliebe 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 (Bartiméus)
  Bartiméushage - an organisation that provides care and services for visual and intellectual disability. Contact [email protected]
• 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. Associação Portuguesa das Doenças do Lisossoma (APL) Av. Defensores de Chaves, 33 - 5º, 1000 - 111 Lisboa, Portugal. Contact [email protected]

Russia

• Rare disease web site
  Contains information for professionals and patients about interregional patients society of lysososomal storage disorders. E--mail: [email protected], 115478 Moscow, Moskvorechie st 1, Zakharova E.

Serbia

• "Life" Association against child rare illness

Spain

• Ceroidolipofuscinosis
• Asociación Española de Familias afectadas por Lipofuscinosis

Sweden

• SSVF - Svenska Spielmeyer-Vogt Föreningen supports the parent group for children with Spielmeyer-Vogt disease: Föräldragruppen för Spielmeyer-Vogt
  Holger Bernhardsson Kajutvägen 2, 453 30 Lysekil tel: +46 523 149 37; mobile: +46 70 605 66 04; Contact [email protected]
• The Swedish association for the visually impaired (SRF Synskadades Riksförbund)

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

• Asociación Pro Niños(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 Peña, Hospital de Especialidades Pediátricas, Maracaibo

Africa

South Africa

• South Africa chapter of BDSRA: President: Pam Jooste, Contact: [email protected]

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