Useful Resources

• For a list of ongoing Clinical Trial information: https://www.clinicaltrials.gov/
   
• EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 988 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe: https://www.eurordis.org/ 
   
• NMD Gene Table: https://musclegenetable.fr/index.html
   
• To identify scientists and doctors actively working on a specfiic condition: https://pubmed.ncbi.nlm.nih.gov
   
• Patient Registries, Treat NMD List: https://treat-nmd.org/resources-support/patient-registries/different-types-of-registries/