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clinical trials

NIH-funded study shows sorafenib improves progression-free survival for patients with rare sarcomas

Interim results from a randomized clinical trial for patients with desmoid tumors or aggressive fibromatosis (DT/DF) show that the drug sorafenib tosylate (Nexavar) extended progression-free survival compared with a placebo. Progression-free survival is the length of time patients lived before their disease worsened. Based on these interim results, the data and safety monitoring board overseeing the trial recommended that the primary results of the study be released. The trial was sponsored by the National Cancer Institute (NCI), part of the National Institutes of Health (NIH); designed and conducted by researchers with the Alliance for Clinical Trials in Oncology (Alliance); and supported by Bayer HealthCare AG, which provided the study drug.
Mar 28, 2018
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research

The Impact of Rare Disease on Family Caregivers

It always hurts when a loved one gets sick. However, the emotional toll and stress increases when you are the primary caregiver for a close family member or friend living with a rare condition for which effective treatments and sufficient support services may be lacking. The National Alliance for Caregiving (NAC), in partnership with Global Genes, a rare-disease advocacy organization, hope to glean greater insights into just what challenges unpaid caregivers of loved ones with rare conditions are facing. The groups have joined forces to survey more than 1,400 American adults currently providing unpaid care to a child or adult with one of more than 400 rare conditions.  
Feb 28, 2018

Annual DTRF Patient Meeting

Sep 21, 2019

Rare Disease Day – Home

Feb 28, 2019

Rare Disease Week on Capitol Hill

Feb 24, 2019

Undy Run/Walk

Nov 10, 2018

CGA Annual Meeting

Oct 14, 2018
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