CBC Radio Interview on Medical PTSD
Have a listen to our Board Chair, Isabel Jordan being interviewed on CBC Radio about medical PTSD and it’s relationship to parents and patients affected by rare disease. Listen Here to CBC Interview
Loblaws Arbutus City Market Supports the Rare Disease Foundation!
On June 29, Executive Director David Cox and Volunteer Deborah Babcock were called to Loblaws Arubutus City Market in Vancouver to be presented with a surprise gift of over $1,100 by Ryan Duncan (Manager and Franchisee) and Brian Pealow (Assistant Manager). City Market has been at this location for just about two years and…
Scotiabank Charity Challenge Run Vancouver
June 25 a team of 11 runners raised $3,605 for the Rare Disease Foundation in our 1st-ever Vancouver run event! Following in the “foot steps” of the Tamarack Ottawa Run Weekend team of 17 that raised $5,225 in May, a smaller but enthusiastic team of 11 runners raised $3,605 in Vancouver, running either the half…
HOT OFF the PRESS!
Read our latest newsletter, released just in time for the Holiday Season! David Cox
WORLDSymposium Lysosomal Scientific Meeting
13th Annual WORLD Symposium takes place February 13-17, 2017 in San Diego Each year, WORLDSymposium hosts a scientific meeting presenting the latest information from basicscience, translational research, and clinical trials for lysosomal diseases.This symposium is designed to help researchers and clinicians to better manageand understand diagnostic options for patients with lysosomal diseases,identify areas requiring additional basic…
RARE IS EVERYWHERE is Almost THERE! Need YOUR Help!
The RARE IS EVERYWHERE book Kickstarter project is closing in on the deadline in just 8 days and we need a little more help! UPDATE: There are now 8 days to go in the RARE IS EVERYWHERE Kickstarter campaign — and while we are going strong, we need around 8k more to make it to…
PRESS RELEASE – Important Discoveries Give New Hope to Rare Genetic Disorders
Novel discoveries funded by the Rare Disease Foundation and recently published in the journal Nucleic Acids Research appear poised to lead to potential new therapies to treat patients across a broad array of genetic diseases. August 25, 2016 Vancouver, BC – Novel discoveries funded by the Rare Disease Foundation and recently published in the…
Cambridge International RARE Disease Summit October 25, 2016
A key event in the rare disease calendar, the Cambridge International Rare Disease Summit brings together academia, healthcare, industry, business, patient support groups and more. It is a chance to build the future of rare diseases and establish best practice in research, treatment and care. Check event website here David Cox
INFORIEL AOÛT 2016 RQMO
Dans ce numéro : – Faisons adopter un Cadre règlementaire pour les médicaments orphelins au Canada – Les conférences, colloques et journées éducatives sur des maladies rares à l’automne 2016 – Campagne de dépistage de l’anémie falciforme Ici…. David Cox
Support Orphan Drug Regulatory Framework
Fellow members of the rare diseases community: Now is a critical time for our campaign to implement a federal orphan drug regulatory framework and an intergovernmental initiative to help fund rare disease treatments so that no Canadian is left behind Read More Here David Cox