2012 Rare Disease Day Conference: Innovation in Research, Therapies and Policies for Rare Disorders   Date: February 29, 2012 - March  1, 2012 Time: 8:30am-3:00pm Location: Ottawa Marriott Hotel, 100 Kent St, Ottawa, Ontario K1P 5R7, Canada This 2 day conference is designed to enable understanding of the broad spectrum of issues and enhance collaboration among all stakeholders To View Draft Agenda Click here To View Event Summary Click here To View Fees Click here To Register Click here 2012 Rare Disease Day Gala February 29, 2012 Reception: 6:00 pm Dinner: 7:00 pm                                Ottawa Marriott Hotel CORD is pleased to announce the first annual Rare Disease Day Gala in support of rare disease research to be held on February 29, 2012. » View Poster Ticket Prices: $150 Individual, $90 Non-Profit Group/Patients. To purchase Gala tickets, please contact Angela at (416) 969-7431. If you wish to become a corporate sponsor, please click here for more info.
	CIHR Café Scientifique on Rare Diseases The rare disease next door: A personalized approach Date: Wednesday, January 11, 2012 Time: 7:00 p.m. to 9:30 p.m. Location:  Grounded Kitchen & Coffeehouse, 100 Gloucester Street, Ottawa, ON To register or for more information, please click here
	Arctic Quest 2011 The Arctic Quest was a huge success! To read the post trip press release follow the link below » Read more Photos of the Arctic Quest can be found on our facebook page » CORD's facebook page Watch the Arctic Quest Video trailer
	Letters of Support CORD is excited to announce that we have received a letter of support from Prime Minister Stephen Harper. » Read here CORD is also excited to announce a letter of support from Minister of Health, Leona Aqlukkaq. » Read here
	CORD Global Genes Research Fund At the 3rd Annual Conference, the Canadian Organization for Rare Disorders launched the CORD Global Genes Research Fund. Individuals, patient organizations, and corporations were invited to host "jeans days" to raise funds for the Canadian Institute for Health Research first research competition for rare diseases. » Read more » www.corddonate.ca To become a part of the CORD Global Genes Research Fund Project, please contact CORD for more information.

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CORD Members,

International Rare Disease Day 2012 is fast approaching, and CORD will be very active in Ottawa and across the country!

We are SO CLOSE to achieving a Health Canada regulatory definition and framework, and we need your help to make it happen.

Please see attached draft letters that make this pitch - we encourage you to send this to all of your members, family and friends, with the hope that they will contact their elected official AND the Prime Minister / Health Minister directly.

To access the email and mailing address for your member of parliament, please visit: http://www.parl.gc.ca/ - where you can "Find an MP by postal code."  Remember printing out and mailing a letter to a member of parliament does not require any postage - it is free.

If you want to send a similar message to your provincial Health Minister or member of provincial legislature, please do so as well by consulting the main provincial government website (see hyperlinks below).

Two final requests:
1. Please confirm that you are going to help us get this message out - we want to know if you will be actively participating in this writing campaign

2. Please report back any replies that you get from these letters - scan or fax them back to CORD - so that we can see how we're doing, and adjust our campaign, accordingly!

CORD will continue to be very active in person and on the hill but our elected officials need to hear directly from our members across Canada as soon as possible!

Let me know if you have any questions, and thank you so much for your support in this effort

Yours very truly,
Durhane Wong-Rieger
President, CORD

Please Click on any of the blue links below

CORD Rare Disorders Letter to Parliamentarians Template
CORD Rare Disorders Advocacy letter to PM & HM Template

Government of British Columbia
Government of Alberta
Government of Saskatchewan
Government of Manitoba
Government of Ontario
Government of Quebec
Government of Newfoundland and Labrador
Government of Nova Scotia
Government of New Brunswick
Government of Prince Edward Island

Special Opportunity for Patient Representatives to Attend the DIA 2012 Annual Meeting & Patient Advocate Fellowship Program. 
If you represent a 501 (c)(3) organization in the United States or registered charity in Canada that serves constituents with:

• Major Chronic Diseases;
• Rare/Orphan diseases and/or;
• Diseases with limited or not treatment options?

Then you are eligible to apply for a scholarship to attend DIA 2012 (June 24-28, 2012 in Philadelphia, PA) as part of the DIA 2012 Patient Advocate Fellowship Program. Click here for more details. Deadline to apply is February 1, 2012.

The Office of the Consumer and Public Involvement (OCAPI) officially launched the Patient and Consumer Participation Pool (the "Pool") for Health Products and Food Branch (HPFB). The goal of the Pool is to build a mechanism which gives HPFB programs easier access to a wider variety of informed patients, consumers and caregivers who are interested in participating in consultation process related to a range of issues. For more information regarding the Pool, please click here.

The Tipping Point for Rare Disorders in Canada
2 Days Toward a Sustainable Solution
Canada was decades behind the rest of the developed world in orphan drug regulations and access programs. But change is happening!
September 15-16, 2011
» Presentations from CORD Tipping Point 2011 Conference
» Agenda

International Alliance of Patients' Organizations
CORD encourages all patient groups to join IAPO. The new IAPO Membership Guide can be found below » Read more

Boy's courage, fight show in Arctic journey
London Free Press, June 10, 2011 » Read more

On-line Support Group Model
Alpha-1 Canada has been developing an On-Line Support Group Model for patients who cannot meet regularly in person.
Online Support Group Leader Manual and Resource Guide
For more info contact: Jim Mundy.

Liberal Party of Canada's response to three questions from CORD  [English] [French]

EURODIS Newsletter
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 434 rare diseases patient organisations in over 43 countries.
» Sign up for Newsletter

Global Genes Project is to raise awareness for millions of children living with rare disease. This campaign brings together support from over 90 corporations, non-profits, research institutions, hospitals & advocacy groups. » Read more

Join us on Facebook Visit CORD's FACEBOOK fan page! Keep up-to-date on upcoming events & news. Meet friends, share stories, find support, and build a network. » More info