A Cedar Park mother and Texas Original Compassionate Cultivation are working to encourage legislators to remove restrictions on qualifying conditions and more. CEDAR PARK, Texas — Texas lawmakers are back in session and some of the bills headed their way have to do with medical marijuana reform. A Cedar Park...
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Fourteen-year-old Emily Deacon has a chromosome disorder that is so rare even the specialists don’t have a name for it. She was born with club feet and epilepsy and, as a teenager, still does not speak and is in a wheelchair. When she was first diagnosed, her mum, Liz, said...
Northwestern University researchers have developed a new injectable therapy that harnesses “dancing molecules” to reverse paralysis and repair tissue after severe spinal cord injuries. In a new study, researchers administered a single injection to tissues surrounding the spinal cords of paralyzed mice. Just four weeks later, the animals regained the...
EURORDIS-Rare Diseases Europe, in collaboration with Rare Diseases International and the NGO Committee for Rare Diseases, has developed a toolkit to support the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families. Vulnerability, exclusion and inequity are the reason why...
NEW DELHI — Recuperating in the cardiac care unit of Batra Hospital, 20-month-old Stawan Bijal Shah refuses his feed and cries for his mother. He is one of the youngest patients to undergo a coronary artery bypass surgery for a rare disease which damaged his heart. When Stawan was just...
ABOUT THE VIRTUAL GALA November 6, @ 8 PM EDT Presented by the Kissam Family and Mark & Rachel Rohr Family Foundation. Be inspired by stories from our community, hear from IRSF leadership, learn about the incredible work that our foundation is doing to accelerate research and empower families. We’re especially...
CAMBRIDGE, Mass. – 2seventy bio, Inc., (NASDAQ: TSVT), an emerging immuno-oncology company today announced its official launch as an independent, publicly traded company. 2seventy bio will trade on the Nasdaq Global Select Market, commencing tomorrow, November 5 under the ticker symbol “TSVT.” “We’ve done the intense work to reach the start...
BAYSIDE, N.Y. — Once every five years the most prestigious and internationally renowned scientists and medical experts on Tourette Syndrome (TS) — the complex neurological disorder that causes involuntary movements and sounds — convene to disseminate and share the latest advances and findings about this baffling condition. As part of...
Checkpoint with forkhead and ring finger (CHFR) is a mitotic stress checkpoint gene whose promoter is frequently methylated in various kinds of cancer. In gastric cancer, CHFR promoter hypermethylation has been reported to lead to chromosome instability (CIN) and genetic instability is one of the hallmarks of human cancer. A...
NEW YORK – There are currently thousands of health conditions that affect people’s lives for which few or no effective treatment options currently exist. Each one of these conditions is an unaddressed market need in addition to a humanitarian need since these patients and the rare diseases that affect them...