Here's a sample of our volunteer opportunities:VIEW AS
Answering TTP Foundation engages the TTP community to further common goals by:
- providing patient support to alleviate the feeling of isolation that accompanies the diagnosis of a rare disorder
- inspiring TTP patients and supporters to share their stories to help enrich the TTP community and garner public support for TTP
- maintaining a consolidated information platform to disseminate information to the geographically dispersed community
- providing a unified voice to ensure access to the safest and most effective treatments
- developing TTP education materials and distribution initiatives to educate the public and the medical community to speed diagnosis and save lives
- supplying fundraising support and guidance to raise funds for effective TTP research to ultimately find a cure!
We represent one strong common voice of action for our patient group, and leverage our resources to most effectively raise funds to support effective national and international research initiatives.
Thrombotic Thrombocytopenic Purpura is a rare autoimmune blood disorder that is considered a true medical emergency. TTP is diagnosed at a rate of 3-4 in 1 million people per year. Potentially fatal complications can result from internal blood clotting with damage to critical organs such as the brain, heart and kidneys.
A TTP, Thrombotic Thrombocytopenic Purpura, diagnosis is scary and complex. Many patients have never heard of this 3 letter acronym before, nor have they any idea as to its ramifications. Moreover, patients are told over and over that we just don't know:
- why it happens
- what may trigger a relapse from remission
- why some patients relapse and others do not
- what the long term prognosis is
- how to ease treatment
- how to cure T.T.P.
These questions remain unanswered because research is limited. TTP is an orphan disease that afflicts 3 in 1 million people. It is too rare to make it economical for pharmaceutical companies to specialize research to find a cure. Answering TTP Foundation fosters research, provides support and furthers education initiatives to improve the prognosis for all TTP patients.
- Taryn Byrne
- Need admin access?
Do you work for this organization?
Request administrator status and update its information!