PORPHYRIA AWARENESS EVENT A SUCCESS!
The 1st Annual Hope Jam Canada - A Porphyria Awareness Week Fundraiser held on Saturday, April 26, 2014 in Spruce Grove, Alberta raised over $2000.00 and increased awareness of porphyria amongst those who attended. Many had never heard about porphyria before. Our thanks to Derry, Tammy, Bernice and their extended family who organized this fun, music-filled evening!
Canadian Organization for Rare Disorders (CORD)
Approximately 3 million Canadians have a rare disorder.
Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.
The solution is for Canada to create an Orphan Drug Regulatory Framework. The United States and most countries in Europe have already created one, but Canada is lagging 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 also create an opportunity for Canadians to participate in clinical trials at the same time as they happen in the rest of the world.
In addition, the Orphan Drug Regulatory Framework is the first step towards Canada taking a leadership position in personalized medicine. Targeted drugs (i.e., based on your genetic code) are now being created to treat specific forms of diseases such as breast cancer and lung cancer. Without this framework, Canadians may not be able to access treatments for their specific disease that are available elsewhere. Imagine if there was a life-saving treatment for your specific type of cancer that was available in Europe and the USA but was not available in Canada, simply because we did not have an Orphan Drug Regulatory Framework?
The good news is, Health Canada has already developed the Orphan Drug Regulatory Framework and announced it in 2012. It is ready to go. Unfortunately, it has never been published and approved. Please join us in signing this petition, and asking the Minister of Health, the Honourable Rona Ambrose, to continue Canada's leadership in healthcare and approve the Orphan Drug Regulatory Framework.
Together we can help the more than 3 million Canadians with a rare disorder get access to life saving treatments at the same time as the rest of the world.
Help us Petition the Minster of Health to Approve the Orphan Drug Regulatory Framework
» Click here to sign the petition.
» Click here to find out more about the Orphan Drug Framework.
Approximately 3 million Canadians have a rare disorder.
Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.
The solution is for Canada to create an Orphan Drug Regulatory Framework. The United States and most countries in Europe have already created one, but Canada is lagging 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 also create an opportunity for Canadians to participate in clinical trials at the same time as they happen in the rest of the world.
In addition, the Orphan Drug Regulatory Framework is the first step towards Canada taking a leadership position in personalized medicine. Targeted drugs (i.e., based on your genetic code) are now being created to treat specific forms of diseases such as breast cancer and lung cancer. Without this framework, Canadians may not be able to access treatments for their specific disease that are available elsewhere. Imagine if there was a life-saving treatment for your specific type of cancer that was available in Europe and the USA but was not available in Canada, simply because we did not have an Orphan Drug Regulatory Framework?
The good news is, Health Canada has already developed the Orphan Drug Regulatory Framework and announced it in 2012. It is ready to go. Unfortunately, it has never been published and approved. Please join us in signing this petition, and asking the Minister of Health, the Honourable Rona Ambrose, to continue Canada's leadership in healthcare and approve the Orphan Drug Regulatory Framework.
Together we can help the more than 3 million Canadians with a rare disorder get access to life saving treatments at the same time as the rest of the world.
Help us Petition the Minster of Health to Approve the Orphan Drug Regulatory Framework
» Click here to sign the petition.
» Click here to find out more about the Orphan Drug Framework.
2013 August 11th
Rare Connect Webinar
Hi there,
We're organizing a living with Erythropoietic Protoporphyria (EPP) webinar on Sunday, August 11th at 20.00 CET/14.00 EST.
Please share the information or this link with your members and contacts:
https://www.rareconnect.org/en/community/porphyria/forum/topic/living-with-epp-webinar
To access the webinar room on August 11th:http://eurordis.emea.acrobat.com/rare_disease_communities/
Enter as a Guest, no password required. Connect a headset, or turn up your speakers to hear people living with EPP and their families speak about their experiences.
If you have any questions, please let me know. If you are interested in telling your story on the webinar, we still have a space available.
Best,
Robert Pleticha, Online Patient Communities Manager, EURORDIS RareConnect.org
Twitter: http://twitter.com/rareconnect
Facebook: http://facebook.com/rareconnect
Rare Connect Webinar
Hi there,
We're organizing a living with Erythropoietic Protoporphyria (EPP) webinar on Sunday, August 11th at 20.00 CET/14.00 EST.
Please share the information or this link with your members and contacts:
https://www.rareconnect.org/en/community/porphyria/forum/topic/living-with-epp-webinar
To access the webinar room on August 11th:http://eurordis.emea.acrobat.com/rare_disease_communities/
Enter as a Guest, no password required. Connect a headset, or turn up your speakers to hear people living with EPP and their families speak about their experiences.
If you have any questions, please let me know. If you are interested in telling your story on the webinar, we still have a space available.
Best,
Robert Pleticha, Online Patient Communities Manager, EURORDIS RareConnect.org
Twitter: http://twitter.com/rareconnect
Facebook: http://facebook.com/rareconnect
PAST EVENTS
2013 March 9th
The Network of Rare Blood Disorder Organizations (NRBDO) – Alberta presents…
Rare Blood Disorders Education Day
Saturday, March 9, 2013
8:00am – 4:30pm
Edmonton Clinic Health Academy
University of Alberta
11405 87 Avenue NW
Edmonton, Alberta T6G 1C9
L1-190 - Lecture Theater - Lower Level.
Pre-registration is required for this free conference!
Online Registration: http://goo.gl/ck5T1
For more information or a registration form, contact
nrbdo.alberta@gmail.com
The Morning:
Presentations with a focus on Comprehensive Care
The Afternoon:
We are very pleased to announce that the Alberta Porphyria Society afternoon break out session will include a presentation by Dr. Brian Gilfix of McGill University, Montreal, Quebec. Dr. Gilfix had served on the Advisory Board of the Canadian Association for Porphyria. You can read his article, Lab Investigation of the Porphyrias on this website.
This will be a rare opportunity to bring together Canadians with porphyria, their family members, medical professionals and researchers. Please join us at this exciting conference!
