Awareness & Advocacy

Answering TTP Foundation strives to raise awareness for TTP and to represent a unified voice of action for the TTP community.  We try to obtain media coverage for all our events in order to raise the profile of TTP within our communities in an effort to speed diagnosis and save lives. Articles are listed within the Resource Links section of our website. If you are affiliated with the media and would like to focus a story on TTP please contact us.

Advocacy plays an integral role in our mission. Answering TTP Foundation endeavors to obtain feedback from the entire TTP community to ensure a strong patient voice within the Foundation. Our advocacy efforts aim to increase funding to treat and cure TTP; improve access to health care and to increase the profile for TTP.  Beyond the Foundation’s own advocacy efforts the Foundation also regularly sends delegates to represent the Foundation at conferences and meetings. The Foundation regularly sends representatives to meetings of the Canadian Organization for Rare Disorders (CORD) and the Network of Rare Blood Disorder Organizations (NRBDO) to learn and contribute to discussion issues surrounding awareness, advocacy and treatment of rare diseases.  

In addition to sending representation to external meetings, the Foundation creates working groups as needed to discuss key advocacy issues. Past and current projects include: providing feedback to our partners in the TTP and rare diseases community, creating a TTP Volunteer Speakers Bureau, advocating for appropriate access to Solvent Detergent Plasma (SDP), creating an annual TTP community survey and composing a TTP Comprehensive Care document. 

If you are interested in getting involved with the Foundation's PAB or learning more please contact us!