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Go Make Memories is the latest NPUK produced short film which centres on a young family and the impact of a Niemann-Pick diagnosis. It uses a mixture of both animation and live-action to better express the effects of this devastating disease on both the individual and the family - but also that there is positivity and hope amongst even the ...
http://www.raredementiasupport.org/ftd/
Frontotemporal dementia (FTD) Welcome to the Frontotemporal Dementia (FTD) support website. This site aims to provide information and support to people with FTD, and their families, friends and healthcare professionals. When faced with the diagnosis of a relatively rare disease in a family member or friend, planning a future for carers is hard.
https://at-aust.org/items/4028
A patient support group for those who have Pink Disease or who have Bronchiectasis. The aim of the group is to supply information and give support to those who have Pink Disease. The group also runs an email chat group for people with bronchiectasis and their families to enable them to swap information and give each other mutual support.
https://www.emedicinehealth.com/pick_disease/article_em.htm
Unfortunately, Pick disease is similar to Alzheimer's disease in several ways. It is a progressive disease, meaning that the symptoms gradually worsen over time and do not get better. The two diseases are equally devastating, causing gradual decline of mental functions and disability. Neither ...
https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/
11q Research and Resource Group. 1p36 Deletion Support & Awareness. 4P- Support Group, Inc. 5P-Society. A Cure for Ellie. A Cure in Sight. A Twist of Fate-ATS. A. J. Pappanikou Center for Excellence in Developmental Disabilities. Aarskog Syndrome Parents Support Group
This Web site is a service of the National Niemann-Pick Disease Foundation's Family Services Program, made possible by the financial support of our member families and other generous donors and grantors. This site receives no government funding, nor does it host or receive funding from advertising or from the display of commercial content.
http://www.healtheo360.com/groups/
Support Groups Find a Community. ... Autosomal Dominant Polycystic Kidney Disease Support Group. Central Precocious Puberty Support Group. Congenital Adrenal Hyperplasia. Cystic Fibrosis Support Group. ... Niemann-Pick Disease (NPD) Support Group. Pompe Disease Support Group. Usher Syndrome Support Group.
https://rarediseases.org/organizations/frontotemporal-dementia-support-group/
The Frontotemporal Dementia Support Group (FTDSG) formerlly Pick's Disease Support Group is a non-profit organization in the United Kingdom that was established by caregivers of individuals with Pick's disease and other related disorders. Pick's disease is a progressive degenerative disease that affects the frontal and temporal lobes of the brain.
https://www.diseaseinfosearch.org/disease/5222/support
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.
https://www.npuk.org/niemann-pick-disease/
Niemann-Pick Disease Type C (NP-C) is a hugely life-limiting neurodegenerative disease caused by an accumulation of lipids (fats) in the liver, brain and spleen. At NPUK we are dedicated to supporting the individuals and families affected by these conditions.
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