Useful Links

Here are some useful links which vary from providing information specific to symptoms of Tay-Sachs to other charity websites.

If you would like to be added to this page then please contact us.

Tay-Sachs charities

Cure Tay-Sachs Foundation (CTSF)

www.curetay-sachs.org

The Cure Tay-Sachs Foundation (CTSF) is a non-profit organization dedicated to funding the research projects that provide hope for developing a treatment and/or cure for Tay-Sachs disease. The CTSF was incorporated on June 1, 2007 in the state of Ohio in the USA. It was started by the parents of children that are suffering or have suffered from Tay-Sachs disease.

National Tay-Sachs and Allied Diseases (NTSAD)

www.ntsad.org

National Tay-Sachs and Allied Diseases (NTSAD) is one of the oldest patient advocacy groups in the USA. They focus on funding research, supporting over 500 families and individuals worldwide, and raising awareness to prevent disease. Today, NTSAD is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support.

National Tay-Sachs & Allied Diseases Association of Delaware Valley (NTSAD-DV)

www.tay-sachs.org

National Tay-Sachs & Allied Diseases Association of Delaware Valley (NTSAD-DV) – www.tay-sachs.org is a non-profit voluntary health agency dedicated to the prevention and ultimate elimination of Tay-Sachs disease, Canavan disease and related lysomal storage diseases (the allied diseases).

National Tay-Sachs & Allied Diseases Association New York Area, Inc. (NTSAD-NY)

www.ntsad-ny.org

The mission of the National-Tay Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives – this mission will be accomplished by funding global cutting edge research and providing families with compassionate care and support.

Children Living with Inherited Metabolic Diseases (CLIMB)

www.climb.org.uk

Children Living with Inherited Metabolic Diseases (CLIMB) is the United Kingdom’s foremost provider of free metabolic disease information to young people, adults, families, professionals and other interested groups. CLIMB also provides information and support to families worldwide, funding educational and primary research programmes to investigate treatments and medical services.

The Society for Mucopolysaccharide Diseases (MPS Society)

www.mpssociety.co.uk

The Society for Mucopolysaccharide Diseases (MPS Society) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases including Fabry Disease, their families, carers and professionals.

Ataxia charities

National Ataxia Foundation

www.ataxia.org

The National Ataxia Foundation (NAF) is dedicated to improving the lives of persons affected by ataxia through support, education, and research. NAF research programs continue to fund promising ataxia research studies throughout the world. The Foundation supports research in dominant ataxia (including SCAs), recessive ataxia (including Friedreich’s) and sporadic ataxia.

Ataxia UK

www.ataxia.org.uk

Ataxia UK aim to support everyone affected by ataxia; people with the condition, their families, carers and friends. They fund fund research into developing safe, effective treatments with an ultimate goal to find a cure for the ataxias. Ataxia UK help people to live with ataxia by providing a range of services that are not available anywhere else.

Dysphagia charities

Fresenius Kabi

www.fresenius-kabi.co.uk

Fresenius Kabi are dedicated to the concept of Caring For Life. This means that they continuously strive to develop specialist skills in the fields of nutrition and infusion therapy and in so doing, provide innovative solutions to meet the highest standards of patient care. Fresenius Kabi is committed to improving patients’ quality of life wherever needed: whether in hospitals, medical centres or at patients’ homes.

Dysphagia.org.uk

www.dysphagia.org.uk

Dysphagia.org.uk is an online resource for patients who suffer from dysphagia. They provide a complete overview of how dysphagia impacts on an individuals life and the latest products which can help with eating. These products include Think & Easy – something which can be added to food. Thick & Easy is the UK’s leading instant food thickener which helps swallowing-impaired patients.

Rare disease charities

Rare Disease UK (RDUK)

www.raredisease.org.uk

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. It was established by Genetic Alliance UK, the national charity of over 140 patient organisations supporting all those affected by genetic conditions. RDUK also work to increase public and professional knowledge of rare diseases and demonstrate the effect that these conditions can have on the patients and families.

Genetic charities

Jewish Genetic Disorders UK (JGD UK)

www.jewishgeneticdisordersuk.org

Jewish Genetic Disorders UK (JGD UK) is a registered charity dedicated to improving the awareness, prevention and management of a Jewish genetic disorders across the Jewish, healthcare professional and wider community. It focuses on a group of genetic conditions, including Tay-Sachs disease, that may affect anyone but are relatively more prevalent among people of Jewish ancestry.

Support charities

Counselling Directory

www.counselling-directory.org.uk

Counselling Directory is a confidential service that encourages those in distress to seek help. The directory contains information on many different types of distress, as well as articles, news, and events. To ensure the professionalism of our website, all counsellors have provided us with qualifications and insurance cover or proof of membership with a professional body.