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Danish NCL Family Association (Battens Disease)

Danish NCL Family Association (Dansk Spielmeyer-Vogt Forening) Forening Brushøjvej 20 8471 Sabro Denmark Contact: Merete Staureby Sinne Hansen 0045 4583 4449 0045 4581 9768



First established in 1969 EIQA is the Irish National Quality Association known specifically for hygiene and quality programmes. EIQA offer solutions to customers that are committed to improving their hygiene and quality standards and view a nationally recognised accredited programme as key to their company's future. In 2010, EIQA chose BeeForBattens as their charity of choice, less than 4 months after the charity was created.


Norweigan NCL Charitiy (Battens Disease)

ORGANISATION NAME: Norsk Spielmeyer-Vogt Forening (Norwegian Spielmeyer- Vogt Association) Address: NSVF, c/o Svein Rokne, Kjøiaveien 42, N-1386 Asker, Norway Telephone number: +47 6902850 Email: Contact name: Svein Rokne


Batten Disease Family Association (BDFA)

c/o Heather House Heather Drive Tadley, Hampshire RG26 4QR Contact: Sam Simpson, Family Support Officer


Batten Disease Support & Research Association USA & More

The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. We currently serve over 1,200 families in the United States, Canada, South America, Australia, New Zealand, and South Africa, just to name a few.


German NCL (Batten disease) Charity Supporting Families

Contact : Wilhelm Rüter Am Waldbach 23 32339 Espelkamp Tel. 05771 3255 e-mail:


German NCL (Batten disease) Charity For Research & Supporting Families

Address: Sabine Schnau Kirchwerder Elbdeich 118, 20137 Hamburg, Germany Contact: Sabine Schnau 00 49407238598


New Zealand Family Support & Reseaech Charity (lysomal sotrage disorders incl . Batten Disease.)

Secretary: Jenny Noble 16 Woodleigh Place Ohauiti Tauranga New Zealand Ph 07 544-8868 Email .


Dutch Family Support & Research Charity

National Charity based in Holland which offers help and support to visually and intellectually impaired persons including Battens Disease Sufferers.


NCL Resource Gateway

Based At UCL London : This site serves as a global gateway for clinicians, families, researchers and those offering professional support, who have an interest in or are affected by Batten disease or who wish to find out more.



IPPOSI is a unique partnership of Patient Groups/Charities, Science and Industry on the island of Ireland. As a patient led partnership, the platform provides a structured way of facilitating interaction between the three key membership groups (patients' organisations, scientists and industry (and where possible with State Agencies) on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs in Ireland.


Medical Research Charities Group

The Medical Research Charities Group (MRCG) is an umbrella group of medical research and patient support charities, which originally formed to represent the joint interests of charities specialising in restoring health through medical research, diagnosis and treatment and, where possible, the prevention of disease. A core belief of the group is that today's health research is tomorrow's healthcare


Anam Cara Bereavement Support To Bee For Battens

Anam Cara Parent Bereavement Support was formed to address the needs of bereaved parents and families throughout Ireland. The loss of your child is like no other and bereaved parents often find themselves isolated and lonely in their grief. Who can really understand how you are feeling? Only someone else who is walking the same road as yourself. Anam Cara will not take the pain away but we hope it will make it easier to bear. We offer ia variety of sevices information, support and events during the year to let you know you are not alone in your darkest hours.


Donal Murtagh Mobility LTD

Bee For Battens recommend the use of Donal Murtagh Mobility LTD for the supply of adapted vehicles. To find out more visit their site or contact them directly on: Donal Murtagh Mobility LTD., Unit 1 Moate Business Park, Clara road, Moate, Co Westmeath. Tel : 090-6481050 Mob: 087-3994500 Email:

Bee for Battens Bee for Battens