MAKE IT RIGHT FOR RARE!

STAND UP FOR RARE DISEASE PATIENTS AND FAMILIES

What makes Canada's public health care work for most Canadians with common conditions are exactly the things that

work against
Canadians with
rare disorders.

Designed in the 1980’s to deliver emergency and cost-effective care to the majority, Canada’s healthcare system has not evolved, leaving behind nearly 3 million Canadians with rare disorders.

 

Over the past decade, most developed, and some developing, countries have implemented national plans to address rare diseases.

 

Canada has yet to do so. 

Today, in Canada, It can take up to seven years to get a diagnosis for a rare disease, up to 14 visits to find the right specialist, and many more years to access appropriate treatment. Most do not have access to comprehensive and supportive care available to those with cancer, diabetes, arthritis, and other chronic disease.

Care for Rare is not a partisan issue!

The Canadian Organization for Rare Disorders
calls upon all federal parties and all candidates
to make it right, to

STAND UP FOR RARE DISEASE
PATIENTS AND FAMILIES!

TAKE ACTION

Send your Candidates a letter reminding them to

STAND UP FOR RARE DISEASE PATIENTS AND FAMILIES

MEET YOUR CANDIDATES

 

As you meet candidates and their team this election, remind them that “1 in 12” has a rare disorder and many more have family members and friends who are affected. CORD calls upon all parties and all individual candidates to pledge to three actions that will significantly improve the lives of those persons:

  1. Endorse and implement Canada’s rare disease strategy

  2. Commit dedicated funds towards treatments for rare diseases

  3. Revise federal drug price regulations to ensure access to treatments and clinical trials

1

Endorse and Implement Canada’s Rare Disease Strategy: Nearly every developed country has implemented a national rare disease strategy. This election is an opportunity for Canada to correct this decades-old deficit. We ask every party to endorse Canada’s Rare Disease Strategy and pledge to implement the recommendations aimed at the federal government. Five key themes of the strategy are early detection and prevention, timely care, community support, access to promising therapies and innovative research. It’s time for Canada to catch up to other countries around the world where rare disease patients benefit from robust national plans.

Commit dedicated funds towards treatments for rare diseases: Federal budget 2019 promised $1 billion over two years starting in 2022 with more dedicated annual funding to follow. This long-awaited injection of funding into a huge treatment gap for patients with rare disorders needs to be taken up by all parties vying to lead the country following the 2019 election. 

2

3

Revise federal drug price regulations to ensure access to treatments and clinical trials: The ill-conceived and potentially disastrous federal drug regulations shoved through at the end of August 2019 are purported to lower drug prices.  However, If implemented, drug prices will be set so far below prices in other developed countries that companies will have no option but to delay introduction of new medicines to Canada until years after they have been launched elsewhere. This means Canadians won’t have access to new medicines or will have to wait a long time before accessing them. Blocking access will also prevent clinical trials from coming to Canada, which is often a lifeline for patients with rare diseases. CORD calls upon every party to commit to revisiting the pricing regulations.

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CONTACT US

Canadian Organization for Rare Disorders

151 Bloor Street West, Suite 600

Toronto, Ontario M5S 1S4 Canada

 

Tel: (416) 969-7464 / 1-877-302-7273

Fax: (416) 969-7420

General Information: info@raredisorders.ca