The CORD needs your help to get the Orphan Drug Regulatory Framework approved now. We quote its letter bellow.
“Dear friend of CORD,
As you know, we’ve been working hard on the Orphan Drug Regulatory Framework and we’re very close. Now we only need you to take two more steps to get this approved.
We’d like you to consider:
1) Signing our petition asking the Health Minister to approve the Orphan Drug Regulatory Framework.
2) Sending a message to your members asking them to consider signing the petition as well. We have attached a sample message that you can use if you’d like.
As a rare disease advocate, you understand that many rare diseases are severe, progressive, and life-limiting. And that early enrolment in clinical trials, or timely access to approved drugs, can make a big difference in quality and length of life. It’s imperative that patients access new therapies as soon as possible.
Sadly, for decades, Canadians with rare diseases have had access to only about 60% of the drugs available in other countries and often up to six years later. It’s time for change.
The good news is that the Orphan Drug Regulatory Framework has been created by Health Canada and is ready to be approved by the federal government.If approved, it will allow more effective treatments to enter the country faster. But this change is not happening fast enough. Announced by the Health Minister in October 2012, the framework has been delayed several times, and we cannot wait any longer. To show your support for the approval of the Orphan Drug Regulatory Framework, please sign this petition now.
You may be aware that research in rare diseases is leading to important breakthroughs in the treatment of more common diseases. About 80% of rare diseases are due to genetic defects, and now we are identifying genetic variations in common conditions such as cancer and diabetes. For example, the majority of lung cancer patients die within six months of diagnosis, but targeted drugs improve the chance of survival at three years from less than 30% to over 70% and in some long-term research, up to 90%. This personalized healthcare can be compared to treating a rare disorder.
On the occasion of Rare Disease Day on February 28th and as part of the Rare Disease Conference happening in Ottawa on March 3rd, we have created a petition to support the approval of the Orphan Drug Regulatory Framework. Will you sign it, in support of the 2.75 million Canadians with rare disorders? And will you take one more step and send it out to your contacts for their support? Let’s try to get on the list of the top 50 Change.org petitions of all time. We hope that you will be the starting point of a momentous wave of support across the country creating a din that the Parliamentarians will not ignore. Together we can make a difference.”