By Sydney Kodatsky | Friday, August 18, 2017 - 7:21am
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.
By Sydney Kodatsky | Monday, August 14, 2017 - 6:06pm
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.
By Sydney Kodatsky | Monday, May 29, 2017 - 6:41am
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 (
By Tammy Robertson | Tuesday, February 28, 2017 - 7:53am
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'.
By Sydney Kodatsky | Thursday, January 26, 2017 - 9:42am
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.
By Sydney Kodatsky | Monday, January 16, 2017 - 1:24pm