Colleges of Physicians and Surgeons


HL wiki – Multilingual resources for patients
tracker orphanet
The portal for rare diseases and orphan drugs
 rareday  cord
Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing all those with rare disorders
 sunshine  makewish
Make-A-Wish and similar organizations put smiles on our children’s faces
 Family Navigator
Family Navigator Helping Canadian Forces Families Navigate Resources within their Communities. Excellent site for finding local resources (if you have a military base nearby)
PubMed is a reliable source of published research into the Dravet spectrum
NIH GeneEd - Genetics, Education, Discovery  GenHomeRef
Health Canada controls most of the policies we need for access to medications such as stiripentol

Enter Scn1a or any gene you’re looking for, and you will get a number of results.

 distax  rdspe
 distaxf  rdspf

Leave a Reply