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KIF1A.ORG | KIF1A Associated Neurological Disorder
KIF1A.ORG is dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder and accelerating research to find a cure.
| Malaysian Rare Disorders Society
Malaysian Rare Disorders Society (MRDS) We represent and look out for the welfare of individuals including their families that are affected by rare disorders. Learn More About MRDS Who We Are Malaysian Rare Disorders Society (MRDS) was formed in 2004, with the help and guidance of the Genetic Unit, Department of Paediatrics, University Malaya Medical […]
Rare Cancer Research Foundation - RCRF
The Rare Cancer Research Foundation is dedicated to shortening the time to cure cancer through innovative collaborations and patient engagement in research.
Rare Disease Database, Rare Disease Conditions, Federated Data Sharing
RARE-X, the Rare Disease Database Platform, collects and shares patient-owned health data with researchers across the globe to spur new treatments and cures.
Cure Rare Disease
Cure Rare Disease™ is developing customized therapeutics for those who have been diagnosed with rare, genetic diseases that have no treatment or cures. Through partnerships and collaboration, our world-renowned researchers build life-saving therapeutics that are custom to the patient they are made to treat.
Neuroimmune Foundation | PANS, PANDAS, Autoimmune Encephalitis, Infectious Encephalitis, Inflammatory Brain Conditions
Neuroimmune Foundation is a 501(c)(3) non-profit organization dedicated to dramatically accelerating physician education of PANS, PANDAS, and encephalitis; significantly improving outcomes for individuals impacted by these disorders; providing meaningful support to families during their darkest days; and catalyzing research at an unprecedented pace.
Arizona Hemophilia Association - Enhancing the quality of life
The Arizona Hemophilia Association is dedicated to enhancing the quality of life for people with inherited bleeding disorders, while advocating for a cure.
Rare Trait Swiss- AGU Rare Disease: Aspartylglucosaminuria
Rare Trait Swiss is a Non-Profit organization which contribute to raise awareness of an Lysosomal rare disease called AGU. Our goal is to fund the medical research to manufacture the cure for AGU kids and to fund a clinical trial using gene therapy
Rare Disease Foundation
The Rare Disease Foundation is on a mission to find cures and treatments through its innovative patient-centric approach to research. The Foundation also funds and operates programs that provide resources through community and clinical support channels.
Rare Earth Association of India, REAI
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Rare Renal | The UK Kidney Association
It is often hard to find detailed information on rare diseases because they affect so few patients. Doctors may only treat a few patients with a rare disease in their whole career. This site aims to provide information and links to 27 different rare renal conditions and their current activity such as patient support groups and research. Please contact us if you are interested
Endo-ERN | European Reference Network on Rare Endocrine Conditions
Endo-ERN , European Reference Network on Rare Endocrine Conditions, European Reference Network on Rare Endocrine Conditions. Endo-ERN’s mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research.
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The FoG | Foundation Glycosylation -
The FoG was established in order to support research for the development of therapies targeting CDG, to help raise awareness of the disorder and to advocate for individuals living with this enzyme deficiency.
MDDA | Metabolic Dietary Disorders Association
Metabolic Dietary Disorders Association (MDDA) is a national self-help group founded in 1996 by parents to support other families and individuals affected by Inborn Errors of Metabolism (IEMs). Rare genetic disorders including Phenylketonuria (PKU), Urea Cycle Disorders, Galactosaemia, Tyrosinaemia (TYRO). MDDA supports and represents families and individuals affected by a genetic Inborn Error of Metabolism whereby treatment involves a medically controlled diet.
Canadian MPS Society for Mucopolysaccharide & Related Diseases – We believe in a brighter future for all Canadians affected by and with MPS
Support for families. Research for a cure. Our support and education programs assist those affected in managing the diagnosis and progression of these rare, often devastating, disorders. Funds raised through donations and special events help fund research that provides hope for a brighter future for all children born with lysosomal
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Brain Research For Brain Disease | United Brain Association
How We Will Cure Brain Disease The United Brain Association’s mission is to empower every individual living with brain disease and to support innovative research for a cure. Finding a cure is about courage, willpower, endurance, and acceptance. It’s about belonging to a community of compassionate listeners. It’s about sharing your hopes and supporting
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Epilepsy Foundation New England | Epilepsy Information, Support & Programs
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Batten Disease Support & Research Association
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RareAction Network
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