myaware provides expert support and advice for people affected by myasthenia. In February 2022 M4RD...
Patient Groups / 931 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 845 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 910 views / Popular
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 818 views / Popular
Rare diseases are individually rare but collectively common, with a combined prevalence of 3.5–5.9%. A...
Journals and Articles / 589 views / Popular
Self-management toolkit Mast Cell Action are delighted to be able to share their self-management resource,...
Learning Resources / 298 views
At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates...
Journals and Articles / 1045 views / Popular
The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...
Patient Groups / 507 views / Popular
In-depth characterisation of a cohort of individuals with missense and loss-of- function variants disrupting FOXP2...
Learning Resources / 373 views
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 938 views / Popular
Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...
Patient Groups / UK / 889 views / Popular
This module provides an overview of genetic haemochromatosis, including the signs, symptoms, diagnosis, treatment, and...
Learning Resources / UK / 604 views / Popular
Designed to provide easily accessible and up to date information for anyone affected by genetic,...
Patient Groups / 1505 views / Popular
We run a Genetic Counsellor-led Helpline for those affected by a genetic condition and their...
318 views
A brief description of Fragile X Syndrome: how it is caused, its effects, diagnostic tests,...
Learning Resources / UK / 584 views / Popular
The Fragile X Society aims to improve the lives of those affected by Fragile X...
Patient Groups / UK / 692 views / Popular
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 697 views / Popular
Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and...
Patient Groups / UK / 872 views / Popular
DEBRA is the national charity and patient support organisation for people living with or directly...
Patient Groups / UK / 564 views / Popular
Dan Jeffries is an incredibly funny and relatable speaker. His talk takes you through his...
Speakers / South West / 2050 views / Popular
