MEDIA ADVISORY / INVITATION - This Rare Disease Day, Feb. 29, CORD celebrates the launch of the Canadian Rare Disease Network - but patients will still have NO access to the promised $1.4 billion in federal funds for rare disease drugs

• The federal government promised a Rare Disease Drug Strategy five years ago and announced $1.4 billion in drug funding last March. Today, not a single patient has received a single penny from that fund despite urgent unmet needs.
• The uniting of healthcare professionals and patient organizations under the Canadian Rare Disease Network will accelerate patient diagnosis and specialist care ... but for many patients they will have no access to life-saving and life-altering drugs that are already approved and recommended but not yet available in public drug plans.

OTTAWA, ON, Feb. 28, 2024 /CNW/ - Patients are OUT OF PATIENCE. Along with families and health professionals, they are demanding immediate release of these funds.

WHEN:            Thursday, February 29, 2024 – the rarest day in the calendar – 9:30 a.m.

WHERE:           Ottawa Parliamentary Press Gallery, 180 Wellington Street, Ottawa

VIDEO FEED / REMOTE QUESTIONS:  Zoom link to be issued by Press Gallery prior to event

WHO:

• Dr. Durhane Wong-Rieger PhD, President and CEO, Canadian Organization for Rare Disorders (CORD)
• Dr. Jida El Hajjar PhD, Vice-Chair CORD Board of Directors and Executive Director of ALS Action Canada
• Dr. François Bernier, Chair, Canadian Rare Disease Network; Professor, Medical Genetics and Pediatrics, University of Calgary; and Project Lead, One Child Every Child, Alberta Children's Hospital Research Institute
• Madi Vanstone, rare disease patient and advocate

The press conference will be followed by a march of rare disease patients and advocates to Parliament Hill to celebrate Rare Disease Day and the launch of the Canadian Rare Disease Network, as well as to protest the lack of long-promised federal drug funding to benefit Canadians with rare diseases.

Participation in the question and answer portion of this event is in person or via Zoom, and is for accredited members of the Press Gallery only. Media who are not members of the Press Gallery may contact [email protected] for temporary access.

SOURCE CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)

For interviews and media enquiries: Don Sancton on behalf of CORD, [phone], [email protected]