The Canadian Organization for Rare Disorders (CORD) announced Friday that it will help launch Canada’s first ever Rare Disease Strategy on Monday, May 25th, at 10am in Ottawa on Parliament Hill.
This Strategy was prepared by CORD further to extensive consultations over the past year with various stakeholders, with input from patients, health professionals, researchers, governments and policy makers across Canada.
Participants include:
- Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders (CORD)
- Kate White, a 24 year old woman who along with her sister Meghan White has Gaucher disease
- Alex MacKenzie, Co-Leader of the internationally renowned “Care4Rare” project at the Children’s Hospital ofEastern Ontario (CHEO)
- Maureen Smith, CORD Secretary,also living with congenital Panhypopituitarism
WHEN: 10:00 a.m. EST, Monday, May 25, 2015
WHERE: Charles-Lynch Room 130S, Centre Block, Parliament Hill
To make the Strategy launch a success, CORD is asking for your help to raise awareness on the Strategy and the need to act now to improve the lives of all Canadian families living with a rare disorder. As soon as the Strategy is announced and posted on the CORD website, CORD encourages you to:
- Voice your support by visiting the CORD website and find out how you can sign CORD’s on-line declaration: www.raredisorders.ca
- Join CORD on Twitter: @raredisorders and #raredisorders
- “Like” and share with friends posts on the Strategy launch that will be featured on CORD’s facebook page (www.facebook.com/RareDisorders).
As next steps, CORD wants to work with you, governments and healthcare stakeholders to implement this Strategy. CORD will also be hosting national forums through social media and travelling across the country in September to talk to all Canadians about the opportunities in the Strategy to improve health care for all and attract new research and investment opportunities.
For more information and to show your support, please visit the CORD website.