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September 4, 2019September 4, 2019

Young hEDS Patients Report Great Number of Physical Symptoms That Affect Their Mental Health

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Young people with hypermobile Ehlers-Danlos syndrome have a considerable number of physical symptoms that have a significant affect on their ability to participate in everyday activities and on their mental ... Read more

August 30, 2019August 30, 2019

‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

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Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: ... Read more

August 28, 2019August 28, 2019

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

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Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such ... Read more

August 21, 2019August 21, 2019

Case of Spontaneous Renal Artery Dissection in EDS Patient Highlighted in Report

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A diagnosis of spontaneous renal artery dissection (SRAD) should be considered in Ehlers-Danlos syndrome (EDS) patients who experience sudden abdominal pain, a case report highlights. The report, “Spontaneous Renal ... Read more

August 19, 2019August 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 14, 2019August 14, 2019

Ehlers-Danlos Society Honors British Actor Jameela Jamil With Patient Advocate Award

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The Ehlers-Danlos Society presented Jameela Jamil, a British actor and activist, with the Patient Advocate of the Year award at its 2019 Global Learning Conference, held recently in Nashville, ... Read more

August 7, 2019August 7, 2019

Patients with Two Mutated Collagen Genes Have Both EDS, OI, Study Reports

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Patients with mutations in the COL5A1 and COL1A1 genes that code for collagen proteins have both Ehlers-Danlos syndrome (EDS) and a bone disease called osteogenesis imperfecta (OI), according to ... Read more

August 2, 2019August 2, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

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Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

August 1, 2019

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

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Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state ... Read more

July 31, 2019July 31, 2019

Analysis Pinpoints Molecular Pathways Underlying Two Types of kEDS

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Despite similar clinical symptoms among kyphoscoliotic Ehlers-Danlos syndrome (kEDS) patients carrying mutations in the PLOD1 or FKBP14 genes, the molecular pathways underlying the disease may be different in each case, according ... Read more

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