Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…
People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…
The Ehlers-Danlos Society has launched an initiative to support healthcare professionals worldwide to care for patients with Ehlers-Danlos syndromes (EDS) and other hypermobility spectrum disorders (HSD). Part of Project ECHO (ECHO stands for Extension for Community Healthcare Outcomes), the online educational and mentoring program called EDS ECHO…
The use of antihypertensive therapies — medications that lower high blood pressure — is not linked to a decrease in the frequency of clinical events associated with vascular Ehlers-Danlos Syndrome, data from a pilot study suggest. The findings were presented in a poster titled, “Pilot Study to…
The Ehlers-Danlos Society will award a total $275,000 in research grants to four projects seeking to advance knowledge of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and improve the quality of life of people with these connective tissue disorders. “This round of grant proposals featured some incredibly…
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…
The Ehlers-Danlos Society is offering several ways to get involved, spread awareness, and raise funds during Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month in May. Through a mix of individual and group challenges, plus tools and other resources, the society is challenging patients and advocates to join in helping…
With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been diagnosed. That’s the warning from Christopher P. Austin, MD, director of the National Center for Advancing Translational Studies(NCATS) at the…
Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for patients with rare diseases who must get to doctors’ appointments or clinical trials that are hundreds of miles away from home.
Celiprolol, a therapy that improves heart rate and reduces blood pressure, can strengthen the aortic walls in a mouse model of vascular Ehlers-Danlos syndrome (vEDS), preventing the aorta from rupture, according to an animal study. Results from the study, “Celiprolol but not losartan improves the biomechanical integrity of the aorta…
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