SPECIAL MESSAGE TO CANADIAN TREATERS: In Canada, we are currently focusing our efforts on advocacy for access to caplacizumab. Please review the letter to Canadian TTP treatment physicians and nurses here for an update on our activities. All Canadian TTP treatment physicians and nurses are encouraged to reply to firstname.lastname@example.org with your thoughts. Please let us know if you have had experience treating patients with caplacizumab at your site.
We are committed to connecting the international TTP community to improve the prognosis for all TTP patients. We ask TTP Treaters to consider supporting the Foundation in the following ways,
1. Register for updates
Register your TTP treatment centre to receive updates and notices to keep you informed and armed with the latest tools.
2. Distribute Educational materials Brochures and Promote support programs
- TTP PATIENT BROCHURE helps to educate patients and their supporters. Download and print free of charge today in multiple languages.
- SOLVENT DETERGENT PLASMA (SDP) BROCHURE helps to educate patients about SDP. Free download Here.
- 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. Complete the form for acces to or our Grant Guideline and Grant Submission instructional documents.
Grant Application Deadline usually April 1 each year.
4. 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.
5. PARTICIPATE IN Working groups, at collaboration meetings AND REVIEW EDUCATIONAL MATERIALS GENERATED FOR PHYSICIANS.
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.
We are happy to share the following materials generated by groups to benefit TTP treating physicians,
ABOUT THE TTP PATIENT BROCHURES
Answering TTP Foundation is excited to provide TTP treatment centres with free of charge TTP patient educational brochures for free download 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.