News Archive

Rare Disease Day February 28th

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'.

AWaRDS Study: Adults with Rare Disorders Support (US study)

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.

Study about living with hTTP

By Sydney Kodatsky | Monday, January 16, 2017 - 1:24pm

A healthcare research firm is looking to identify adolescent hTTP patients in both the US and UK living with hereditary thrombotic thrombocytopenic purpura (hTTP). The main study has been completed. This research may help improve how the patient’s experience is accounted for in clinical trials for new treatments, and may also lead to interventions designed to better support patients and their families going through the treatment experience.

PTSD and Depression Journal Article

By Sydney Kodatsky | Monday, January 9, 2017 - 7:31am

A paper on PTSD and depression in TTP survivors was recently accepted for publication in Thrombosis Research. The study was conducted by a Clinical Fellow of Vanderbilt University Medical Center, Shruti Chaturvedi. Answering TTP Foundation spread the word about this very important research. Thank you to those who took part. There is more work to do. Register for the Answering TTP Community to receive invitations and updates like these.

NEW 2016 Research Grants

By Sydney Kodatsky | Monday, September 5, 2016 - 7:30am

Over $1.5 million committed to research grants through 2018.

Answering TTP Foundation understands the need for biomedical, clinical and population health research and accepts research proposals internationally. We are excited to announce the funding of three new promising international resesarch grants beginning September 2016.

Journal Article covering TTP Dinner Symposium

By Sydney Kodatsky | Friday, June 17, 2016 - 1:19pm

The Meeting Report from the TTP Dinner Symposium on June 23, 2015 was published online on June 8, 2016 (ahead of print) by the Expert Review of Hematology journal. Authors: Pavenski K, Cataland S, Kremer Hovinga J, Thomas M, Vanhoorelbeke K. Congratulations to the authors.

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