We are committed to connecting the TTP community to improve the prognosis for all TTP patients.
1. Register for updates
Register your TTP treatment centre to receive our free educational materials for your patients on a yearly basis and updates from the Foundation in our Annual Correspondence Packages; as well as, focused updates tailored for TTP treatment centres to keep you informed and armed with the latest tools.
2. Distribute Educational materials Brochures and Promote support programs
- TTP PATIENT BROCHURE TTP treatment centres have access to a free supply of these brochures to help educate patients and their supporters. Register your TTP treatment centre to order.
- SUPPORT GROUPS Everyone can participate in our conference-call enabled support group and information sessions. For more information Click Here.
- ANSWERINGTTP.ORG Our website is constantly updated to be a real-time hub of information to the TTP community.
- NEWSLETTER The electronic newsletter shares patient stories and new developments to keep the Answering TTP Community informed. Click Here to see previous newsletters.
3. APPLY FOR RESEARCH GRANTS
Answering TTP Foundation raises funds, not tied to one institution, for effective TTP research. We recognize the need for biomedical, clinical and population health research. We promote international collaboration to speed research for our small and geographically dispersed patient population.
Answering TTP Foundation will consider research proposals that demonstrate a direct link to TTP. Email us for our Grant Guideline and Grant Submission instructional documents at Grants@AnsweringTTP.org.
Grant Application Deadline: April 1
4. Add the TTP Order Sets to Your Hospital's Working Library
Answering TTP Foundation released these valuable tools to help speed diagnosis for TTP in 2013. Please note that the Foundation does not provide medical advice or care.
Together with PatientOrderSets.com's Clinical Research and Development team, and an international panel of TTP expert physicians, Answering TTP Foundation has developed two order sets, and an associated supporting document to support the first response investigation and treatment of TTP.
These tools were developed over the course of multiple virtual meetings with expert TTP treatment physicians in Canada, USA and Europe. The documents are designed to provide evidence-based recommendations for the diagnosis and management of TTP.
5. Connect with other TTP Experts
Do you have a challenging TTP case that you would like to discuss with one of the members of the TTP Medical Advisory Network?
If so, please send us an email at contact@AnsweringTTP.org providing your contact details, and we will connect you. The Foundation is dedicated to facilitating collaboration amoungst the TTP medical community. Please note that the Foundation does not provide medical advice or care, and this is not a medical referral. We do strongly advise you to consider any and all other information you consider appropriate.
6. PARTICIPATE IN Working groups and at collaboration meetings
Answering TTP Foundation engages the medical community to help further goals of the Foundation. This includes: connecting patients with TTP specialists; developing and sharing best practices for treatment; and bringing together TTP experts to foster collaboration.
ABOUT THE TTP PATIENT BROCHURES
Answering TTP Foundation is excited to provide TTP treatment centres with free of charge TTP patient educational brochures. Information contained in these brochures can be found here. Translation in French, Italian, Portuguese, Punjabi, Russian and Simplified Chinese are also available for download here.
We believe that handing out these brochures to TTP patients will help to ease patient anxiety. You now have an informational source to pass on to patients that not only provides them with an easy to understand description of the blood disorder, but it also informs them that despite the rarity of the disorder there is a supportive TTP community that they can reach out to.
As a patient organization, we know the confusion, isolation and fear that accompanies the diagnosis of TTP. As patients, we all remember lying in a hospital bed after diagnosis trying to pronounce Thrombotic Thrombocytopenic Purpura, never-mind come to terms with what it meant.
This educational piece was edited by the Canadian Apheresis Group to ensure its accuracy.
Please direct feedback to Contact@AnsweringTTP.org.
Members of our Medical Advisory Network
Please note that the list of physicians listed above is not meant to be a contact list for a second opinion. If you are a patient who is interested in a second opinion a referral from your doctor is necessary.