URGENT! Consultation on Access to Rare Disease Drugs

BIG NEWS! Provincial Working Group on Expensive Drugs for Rare Disease (“EDRD”) holding Consultations on a proposed “Supplemental Process” that could be a winner!

On October 17th, the Provincial/Territorial Expensive Drugs for Rare Diseases Working Group announced consultations on a proposed Supplemental Process for Complex/Specialized Drugs, including those for Rare Diseases. The Canadian Organization for Rare Disorders (“CORD“) has been advocating for over 12 years for a Drugs for Rare Diseases Program, appropriate to the unmet needs of small patient populations, while recognizing the cost of therapies and the challenges in inherent in determining their safety and effectiveness.

The EDRD Working Group is asking for feedback from all stakeholders on the proposed Supplemental Process and has suggested that CORD coordinate the feedback from member organizations. Please take a few minutes (13 to be exact) to complete this survey so we can be sure that CORD hear from the Rare Disease Patient Community.

The key elements of the EDRD Supplemental Process are summarized in the survey, but if you wish to find the full proposal, you may find it on the CORD website.

Please complete the survey at your earliest opportunity but no later than December 10, 2018.

If you have any questions, please feel free to contact:
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4