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March 13, 2019March 13, 2019

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

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With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases and the expensive therapies needed ... Read more

March 6, 2019March 6, 2019

NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research

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Rare diseases affect about 30 million Americans — roughly the same number as those with type 2 diabetes. Yet only 5 percent of the estimated 7,000 rare diseases known ... Read more

February 27, 2019February 27, 2019

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April

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The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government officials is planned for April 10–12 in a Washington, D.C., suburb. Some 1,200 people have ... Read more

February 20, 2019February 20, 2019

Vienna to Host RARE2019 Meeting on Rare Diseases

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About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The ... Read more

February 13, 2019February 13, 2019

Molecular Analysis Pinpoints Potentially Important Pathways for Classical EDS

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A gene expression analysis identified several deregulated pathways in fibroblasts from classical Ehlers-Danlos syndrome (EDS) patients, offering new insights for future studies investigating the disease mechanisms and potential therapies, ... Read more

February 12, 2019February 12, 2019

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

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Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run ... Read more

February 6, 2019February 6, 2019

ESP Block Is Safe, Effective During Surgery in EDS Patient, Report Says

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Erector spinae plane (ESP) block can improve the safety of surgical procedures in patients with Ehlers-Danlos syndrome (EDS) and offer effective pain relief, according to a case report. The ... Read more

January 31, 2019January 31, 2019

FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases

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The U.S. Food and Drug Administration (FDA) is updating its 2015 draft guidelines for drug discovery in rare diseases, with new guidance on natural history — how disorders such ... Read more

January 30, 2019January 30, 2019

Cherry Hill Schools Raised More Than $10,000 For EDS Group Through Volleyball Tournament

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The Cherry Hill Education Association raised more than $10,000 for the non-profit organization Ehlers-Danlos Society through its 14th annual “Volley for Support” fundraising tournament that took place in October ... Read more

January 23, 2019January 23, 2019

Periodontal EDS Linked to Changes in Brain’s White Matter, Case Series Finds

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Patients diagnosed with periodontal Ehlers-Danlos syndrome (EDS) may also have changes in the brain’s white matter, which makes up the tissue in the brain and spinal cord, a case ... Read more

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