News Archive

Blood Donation

Ashlee shares her story

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.

Foundation News

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.

Rare Disease Day February 28th

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)

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

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.

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