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Zogenix - Therapeutic Solutions for Rare Diseases
Zogenix is committed to developing and commercializing transformative therapies to improve the lives of patients and their families living with rare diseases.
Home – Neurological Alliance
Welcome to The Neurological Alliance Campaigning for change together. We are a coalition of over 70 organisations working together to transform quality of life for people with neurological conditions. Neurological conditions, like cerebral palsy, ****, dementia and epilepsy, can affect every part of your life, from eating and sleeping to working and playing. When you […]
| 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 […]
Spark Neurocare – Spark Neurocare
We understand progressive neurological diseases. SPARK NeuroCare are experts in working with people living with progressive neurological diseases like Multiple Sclerosis (MS), Motor Neurone Disease (MND), Huntington's, Parkinson's and Epilepsy. We can help you with: Understanding and applying for the NDIS and My Aged Care
Author: Sncadmin
Diseasemaps - World Maps of Chronic and Rare Diseases
Connect with people who share your disease and help each other. World Maps of Chronic and Rare Diseases. The main purpose of the project is to help people with chronic and rare diseases. Living with these diseases is usually hard and it is not always properly understood by society. Therefore, we want to spread awareness about all of them and help people who are nowadays suffering. Through this website, you can check how your disease is spread all over the world.
- Rare Dementia Support
Between 5% and 15% of people living with a dementia have a rare dementia. This can bring with it a unique and complex set of challenges, including difficulties with language, vision, movement and behaviour. However, there is a widespread lack of understanding and a shortage in the resources needed to support those affected. Rare Dementia […]
Alnylam® Pharmaceuticals—The Leading RNAi Therapeutics Company
Alnylam is leading the translation of RNA interference (RNAi) into a innovative, entirely new class of medicines which we believe have the potential to transform the lives of patients who are living with rare and genetic diseases.
Dravet Europe | Dravet Syndrome European Federation
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Dravet Syndrome European Federation (DSEF) is a non-profit organisation, a federation of European organisations, active in the field of Dravet Syndrome and driven by patients and patients’ caregivers. Together we have built a strong European community of people living with Dravet Syndrome. We are this community’s voice and, directly or indirectly, we fight against the impact of Dravet Syndrome.
Author: DSEF
Changing the game - The Nathan Project for Rare Diseases
Kids with rare diseases often fall through the cracks of healthcare systems, causing serious problems for patients, their families, and the doctors who treat them. We are developing a needs assessment tool to help doctors and researchers find and fix these gaps, transforming the lives of these families. Left: Our ambassador, Nathan Garcia […]
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