Friday, 29 March 2013

NRBDO Alberta Education Day

On March the 9, 2013, the Network of Rare Blood Disorders Organizations (NRBDO) Alberta chapter hosted a successful conference!  The Education Day was packed with discussion regarding common rare blood disorder topics, and focused on comprehensive care. The topics were easy to understand for all the patients present at the conference.  

In the afternoon, each group separated to individual rooms for discussions. Dr Bruce Ritchie spoke on TTP.  He explained about the disease and informed us on what is being researched at present.   Out of 14 people present, 6 were patients.  We were lucky to also have an Apheresis nurse participate in our discussion. All participants had the opportunity to share their story and learn from each other.

Answering TTP Foundation is excited to collaborate with the rare disease community. 
If we join force, we shall be heard!

Written by Mina Rajan, Patient Advisory Board

Wednesday, 20 March 2013

Roadshow Montreal

 On Friday March 1, 2013 I met Caroline for the first time to "cold call" the Montreal area TTP treatment centres. We were able to meet with TTP medical staff at the Royal Victoria Hospital, Hopital Notre-Dame, Hopital Maisonneuve-Rosemont, and Jewish General Hospital.

Caroline and Sydney
Hospitals Visited
New Patient Brochure
We encouraged all those we met with to share our free-of-charge new patient brochure with their TTP patients. Not only does this brochure help patients and their families understand a TTP diagnosis, but it introduces them to the supportive and informative Answering TTP Community.

It was a great start to growing the Quebec Answering TTP Community to enable the Foundation to influence equal access to the most advanced TTP treatment options.

On Sunday March 3, 2013 we hosted the first Quebec Meet and Greet Foundation session. Gergana (Patient Advisory Board) and I met with local patients and supporters to share and provide peer support,  explain why the Foundation exists, and how they can get involved to help answer TTP.

We are thrilled to have interest from this group to edit our French language translations, become involved on the Patient Advisory Board, organize local patient support group and information sessions, and fundraise for research.

Together we are more than the sum of each part!

Written by Sydney Kodatsky.