Patient Organizations & Information
General Information for Patients, their Families and Caregivers
A closer look at stem cell treatments – ISSCR
Website designed to equip patients, their families and doctors with tools and information to help make decisions about stem cell treatments.
ISSCR Patient Handbook on Stem Cell Therapies
Available in English, French, German, Italian, Spanish, Portuguese, Dutch, Japanese, Persian, Turkish
Notre Recherche Clinique
Le portail des essais cliniques et de la recherche clinique / Clinical trials and clinical research portal, in French
Alzheimer’s Society (UK) | Alzheimer Scotland | Alzheimer Europe | Alzheimer’s Research Forum
This research-oriented website reports on the latest scientific findings, from basic research to clinical trials; creates and maintains public databases of research data and reagents, and hosts discussion forums to promote debate, speed the dissemination of new ideas, and break down barriers across the numerous disciplines that can contribute to the global effort to cure Alzheimer’s disease.
Motor Neuron Disease
Also known as ALS or Lou Gehrig’s disease. See our fact sheet on motor neurone disease and stem cells.
The National Institute of Neurological Disorders and Stroke | Motor Neuron Disease (MND) Association | MND Scotland
Multiple Sclerosis Information Pages
The European Multiple Sclerosis Platform | The Multiple Sclerosis Society
Multiple Sclerosis Trust | The National Insitute of Neurological Disorders and Stroke
See our fact sheet on muscular dystrophy and stem cells.
Muscular Dystrophy Campaign (UK) | Association Français contre les Myopathies
Action Duchenne – aims to offer a unique forum for sharing information and ideas in the search for a cure and better medical care for Duchenne and Becker. This link takes you directly to a blog post by Professor Terry Partridge about stem cells and muscular dystrophy.
See our fact sheet on Parkinson’s disease and stem cells.
European Parkinson’s Disease Association | Parkinson’s Disease Society (UK)
The National Institute for Neurological Disorders and Stroke – Parkinson’s disease information page.
PDTrials – a collaborative initiative of Parkinson’s organizations dedicated to increasing education and awareness about clinical research. Trials listed are in North America, but lots of useful information for anyone with Parkinson’s.
Spinal Cord Injuries
See our fact sheet on stem cells and spinal cord injuries
ICCP – International Campaign for Cures of Spinal Cord Injury Paralysis
European Spinal Cord Injury Federation – Pan-European federation of organisations representing people with spinal cord injuries
The Stroke Association | The Stroke Trials Directory of the Internet Stroke Center
The National Institute of Neurological Disorders and Stroke – Stroke Information Page
Stroke Alliance for Europe – Listing of European Patient Organizations
Type 1 Diabetes
See our fact sheet on type 1 diabetes and stem cells.
Juvenile Diabetes Research Foundation International
Other Information for Patients
Progress Association – Infertility and Genetic Disease
European Society of Human Genetics – Genetic Diseases and Genetic Testing
Follow current and accurate information about causes and preventive treatments.
Stem Cell Organizations, Networks and Consortia
International Stem Cell Organizations
ISSCR – International Society for Stem Cell
ICSCN – International Consortium of Stem Cell Networks
SSSCR – Student Society for Stem Cell Research
Genetics Policy Institute – Nonprofit Organization Dedicated to Establishing a Positive Legal Framework to Advance Stem Cell Research
European Stem Cell Organizations, Networks and Consortia
Research consortia (FP6/FP7)
Beta Cell Therapy | BEST Stem Cells | EndoStem
ESTOOLS | EU Human Embryonic Stem Cell Registry | EuroStemCell
EuroSyStem | NeuroStemCell | OptiStem
Purstem | REMEDiE | Stem-HD
National and Regional Stem Cell Networks
STEM-Pole (Paris Regional Stem Cell Network, France)
German Stem Cell Network
German Society of Stem Cell Research
Stem Cell Network North Rhine Westphalia
Norwegian Stem Cell Center
Swiss Stem Cell Network
Stem Cells and Regenerative Medicine National Research Programme (NRP63)
Scottish Stem Cell Network
East of England Stem Cell Network (EESCN)
North East England Stem Cell Institute
London Regenerative Medicine Network
UK National Stem Cell Network – Archive Website, as the UKSCN ceased operation in 2011
North American Stem Cell Networks
Stem Cell Network Canada
Canadian Stem Cell Foundation