Tuesday 8 October 2013

Answering TTP Foundation Attends CORD Fall Conference

On Sunday, September 29, 2013 and Monday, September 30, 2013 Taryn (Charitable Programs Director) and Gergana (Patient Advisory Board), attended the Canadian Organization for Rare Disorders (CORD) Fall Conference in Ottawa, Ontario.

Both days were packed with informational presentations made by industry members (Pharma Companies), patients with different rare disorders, medical professionals and patient organization professionals.

The first day was dedicated to developing organizational excellence, which split participants into working groups that were geared towards helping patient organizations like Answering TTP Foundation learn more about; advocacy, volunteerism, patient support programs and communications both online and interpersonal. Gergana and Taryn split into different workshops in the hopes that Answering TTP Foundation could retain a wide variety of information to help the Foundation continue to grow and move forward with our goals! Some of what Taryn and Gergana learned will be seen in updates to programs such as the volunteer program as early as next week, with the introduction of our new Volunteer Involvement Form, which is a way to expedite the volunteer application process, allowing volunteers to sign up online. This will also allow Answering TTP Foundation better match volunteers based on their skill set to our many volunteer opportunities!

Yann Le Cam of EURODIS
The second day was equally as interesting and informative to the Foundation and focused on the planning process for a Canadian plan for rare disorders. We heard from panels of patients, medical and research professionals as well as industry professionals on the importance of developing a plan for rare disorders in Canada. We also had the pleasure of hearing from Yann Le Cam (Keynote speaker of the CORD fall conference), who is the Chief Executive Officer for Rare Diseases Europe (EURODIS). He spoke about the European rare diseases plan, which could be used as a guideline for the Canadian plan. That afternoon the conference was again broken out into small groups to help zero in on what we, as patient organizations in Canada, can do to help prepare the Canadian plan for rare disorders. 

To learn more about how you can get involved check out our "Get Involved" page and choose a volunteer level based on your availability. 

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