News
12799188_1018362524896193_1109426731255099274_n

PARLIAMENT HILL PAINTED IN YELLOW TO SUPPORT RARE DISEASE PATIENTS AND FAMILIES

On March 10th, yellow scarves will take over the House of Commons in support of rare disease patients and families! Members of Parliament from all parties have agreed to wear the bright scarves bearing the logo of Rare Alliance Canada, a multi-stakeholder alliance aimed at improving the lives of patients with rare diseases who face tremendous challenges in terms of getting the right diagnosis, care and treatment (see: http://www.rarealliancecanada.org).

Following Question Period – at 3:15pm – parliamentarians will be joining patients, caregivers and representatives from the Canadian Organization for Rare Disorders (CORD) for a unique and RARE photo opportunity in front of the Parliament Building.

Rare disease patients’ visit to Parliament Hill coincides with International Rare Disease Day that took place on February 29, 2016. The rare disease community is asking the new parliament and government to join them in implementing Canada’s Rare Disease Strategy!

WHAT: RARE photo opportunity with MPs, Senators and rare disease patients wearing bright yellow scarves!

WHEN: THURSDAY, MARCH 10, 20 3:15 pm

WHERE: In front of Centre Block (outside steps)

WHO: Members of Parliaments and Senators

Dr. Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD)

CORD Youth Leadership Award recipient and local hero Jonathan Pitre (and mother Tina Boileau), Ottawa rare disease patient (known as “Butterfly Child” with Epidermolysis bullosa)

50 other members of the rare disease community

-30-

CONTACT: Durhane Wong-Rieger
Canadian Organization for Rare Disorders
(647) 801-5176
durhane@sympatico.ca