Please Sign The Petition! Support the Canadian Orphan Drug Regulatory Framework!

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 Change.org 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.

Sincerely,
Sherri L. Jones, 

The Tarlov Cyst Society of Canada

Brampton woman struggles with multiple rare diseases - A story about me, not written by me.

UPDATED: Brampton woman struggles with multiple rare diseases

I've been writing about my rare disease since I was first diagnosed in 2010, but for the first time ever, someone else wrote a story about me and the rare diseases and limitations I live with.

It will be four years this January since this nightmare began, and since I was injured in the January 2010 motor vehicle accident, I've received almost no support from the Insurance company I'd been paying, with no claims, for years.

The insurance company repeatedly claimed that the accident itself had nothing to do with my suffering, but I believe it's more than a little difficult to deny when pre-MVA I was mobile, independent and working hard towards achieving my dreams after graduating with high honours from an intense and demanding, Broadcast Journalism program at Sheridan College School of Arts and Design.

These diseases and symptoms can make anyone feel like their body's become their prison. The pain levels from these diagnoses give new meaning to what Doctors refer to as -ten out of ten-. It's a constant, never-ending pain that's very difficult to control.

I personally went from walking independently to relying on an expensive and unique electric wheelchair that's been built to relieve my pain, improve independence and extend my mobility. But without wheelchair accessibility built into my world, then the chair and I become prisoners, thanks to insurance claim denials.

I live in the Country, in a little town between two cities, without public transport. My chair can't be lifted into a car trunk or travel freely in snow or rain. Without a wheelchair-accessible vehicle, I cannot use it as we'd hoped.

For the first time since this journey began, I've lost feeling in one of my legs. My Doctors tell me to go to the Hospital, but without the chair, it's an uneasy task, so I'll put it off until tomorrow, which is the third day since the loss of feeling first hit.

Right now, with this loss of feeling in my leg, I'm reminded of how urgent it is to change my world to include wheelchair accessibility, and I hope you'll take part in helping me receive what I need.

I hope you will do what you can to assist with the purchase of the wheelchair-accessible van I need, which is one of the most important things that the insurance denied.

To donate to;

 "Funds for Freedom" 

 please visit; 

http://www.gofundme.com/4onw04

To donate through bank email transfers (e-transfer) please forward to 

sherri.jones@live.ca 

Please read the attached article written and shared through The Brampton Guardian, a community newspaper.

https://www.bramptonguardian.com/life/updated-brampton-woman-struggles-with-multiple-rare-diseases/article_9c115571-ac9b-58bd-b1be-1142dd8dfce4.html?

In the article, you'll learn more about these diseases' effects and the challenges patients face when diagnosed.

Thank you for your support.

Sincerely,
Sherri
sherri.jones@live.ca