Please Support Canadians in their need for an Orphan Drug Regulatory Framework!

Please support our ongoing efforts by signing our petition. Please join us in requesting that the Canadian Federal Minister of Health approve the Orphan Drug Regulatory Framework.

What is this framework about?

Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save, or significantly improve their lives. This has got to change!

The solution is for Canada to initiate an Orphan Drug Regulatory Framework. The United States and most countries in Europe have this life saving system in place, but Canada is lagging too far behind.

The Canadian framework will allow drug companies to apply to bring their treatments to Canada at the same time as the USA and Europe. It will create opportunities for Canadians to participate in clinical trials at the same time as other patients around the world.

Here’s the good news!!

Canada’s Orphan Drug Regulatory Framework is already developed and ready to go!

The Orphan Disease Initiative was announced by the Federal Health Minister in October 2012, but the Orphan Drug Regulatory Framework has been repeatedly delayed. Canadians are forced to wait, while other patients with the same orphan disease in other Countries are not. As we wait for this Framework to come into action, patients are suffering, while others are losing their chance at living healthy, productive lives. Orphan disease patients cannot afford to wait any longer.

On Rare Disease Day, this February 28th, and as part of the Rare Disease Conference taking place in Ottawa on March 3rd, we have created a petition to ask the Canadian Health Minister to approve this framework. This approval can help the existing 3 million people, living with rare diseases in Canada, get access to the treatments and clinical trials that can make a difference in their lives today.

Will you sign our petition and add your name in support of the millions of Canadians with rare disorders?

We hope that you will be the starting point of a momentous wave of support across the country. Let’s create a noise that Parliamentarians cannot ignore. Together we can make history! Let’s try to get on the list of the top 50 petitions of all time! Canadians, and orphan disease patients deserve no less.

Please share this information and our petition with to your friends and family. Ask them to join in support of orphan disease patients across Canada.

Please remember. Your support today could mean the difference between life and death to someone you love; now or in the future.

Petition -MOH – Approve The Orphan Drug Regulatory Framework!

Together we can make a difference. 

Thank you in advance for your time.


Sherri L. Jones

The Tarlov Cyst Society of Canada