Walk to Answer TTP participant continues her awareness and fundraising for TTP. On September 22 Pam hosted a blood drive in Charlottetown. Pam has been participating in the annual Walk to Answer TTP Together since 2012. Thank you for your dedication to the cause Pam. Your efforts keep the conversation about TTP alive. Pam's story is available here.
Ashlee bravely shares her story for a local blood drive. Ashlee will be walking with the Community on September 16, 2017 and is featured on this year's walk awareness poster. Thank you Ashlee for being such an active advocate for TTP. Together we will improve the prognosis for all those affected by TTP. Local news coverage here at ksby.com.
The Foundation is being restructured to focus volunteer resources. Marie has been the Foundation’s administrator over the past five years thanks to the support of the Unilock Group of Companies. Today will mark Marie’s last day in this role*. Marie is not going far; she will continue in a bookkeeping capacity.
2017 Walk to Answer TTP Together participant fundraising directly impacts the Foundation's ability to provide ground breaking research funding. The Foundation is excited to announce funding of a new research grant entitled A Prospective Study to Assess the Vascular Burden in TTP Patients. The investigation will apply advanced imaging tools and evaluate blood markers.
The article published April 2017 in Nature Reviews Disease Primers will serve as reference resource for experienced researchers and a useful broad introduction to the field for early career researchers and medical students. Two of the five authors are researchers (
Today, events are occurring around the world to recognize rare diseases. What a great time for you to get involved in supporting a rare disease by making a difference. This year Rare Disease Day has created a theme around RESEARCH, with a slogan of 'With research, possibilities are limitless'.
Ablynx submits a marketing authorisation application to the European Medicines Agency for Caplacizumab, for the treatment of aTTP. If approved, it will be the first therapeutic specifically indicated for the treatment of aTTP.
What is the study about? In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders in the US. The purpose of this research study is to assess these needs, from the perspectives of people with a variety of rare disorders, to find similarities and differences across disorders.