Niemann-Pick disease

Support Type
Support Services
  • Niemann-Pick Disease Group (UK)

    The aim of the Niemann-Pick Disease Group (UK) is to make a positive difference to families affected by the disease through the provision of Care, Information and Research.

    Care takes the form of providing a central office with a 24hour telephone help line and funding a dedicated Clinical Nurse Specialist to give support through advice, counselling, specialist clinics and advocacy.

    Information is provided through leaflets, newsletters, family newsbulletin, family directories, care manuals, our website and the Annual Family Conference.

    Research is in collaboration with other organisations and support groups. Our focus is maintained by a Research Co-ordinator and we offer an annual memorial award.

    Disease Support Organization Last Updated: 30 Jan 2019
  • National Niemann-Pick Disease Foundation, Inc.

    The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is an international, voluntary, nonprofit organization made up of parents, medical and educational professionals, friends, relatives and others who are interested in fighting Niemann-Pick disease.

    Disease Support Organization Last Updated: 30 Jan 2019
  • National Tay-Sachs & Allied Diseases Association, Inc.

    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.

    Disease Support Organization Last Updated: 30 Jan 2019
  • Contact a Family

    Contact a Family improves the lives of all families with disabled children. With them, we transform their lives, break down barriers and tackle disadvantage through ambitious, collaborative and innovative work. We make a real and lasting impact and are a force for positive change.

    General Support Organization Last Updated: 13 Nov 2018
  • Advocacy for Patients with Chronic Illness, Inc.

    To provide free information, advice and advocacy services to patients with chronic illnesses, in areas including health and disability insurance, Social Security disability, employment discrimination, school-based accommodations, and resource location.

    General Support Organization Last Updated: 13 Nov 2018

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