A testicular cancer survivor from Beverley has organised a charity fun run to raise awareness of the condition. Chris Robson, 28, of Butt Lane, was diagnosed with testicular cancer in June last year and had surgery to remove a testicle before undergoing chemotherapy. He has now been given the all-clear...
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Cleveland, Ohio – Cleveland Clinic and the University of Western Ontario have been awarded a $4.9 million grant from Helmsley Charitable Trust to build a consortium to develop clinical trial outcome tools for patients with Crohn’s disease and permanent ileostomy. A permanent ileostomy is a surgical procedure to divert stool...
People living with rare diseases often find themselves with more questions than answers when it comes to diagnosis and treatment. Symptoms can be unclear, making misdiagnoses common. This is often the case for people living with WHIM syndrome – a rare and difficult-to-diagnose disorder in which the body’s immune system...
Burton-on-Trent, England – Clinigen, the global pharmaceutical services company, today launched a new campaign called ‘What is Possible?’ to help empower patients and medical professionals to ask what more is possible in the treatment of rare diseases. There are over 7,000 rare diseases impacting over 300 million people globally, and...
At a high school pep rally you would expect to see cheerleaders and mascots, but you wouldn’t expect to see a 6-year-old. On Wednesday at Grandview High school in Aurora, their guest of honor was 6-year-old Maxwell Freed. “Having him back was really special to us,” said senior class president,...
NEW YORK, NY — Columbia University scientists have been awarded a $15 million grant from the NIH’s Ultra-rare Gene-based Therapy Network to design tailor-made gene-based therapies for nine people with rare forms of amyotrophic lateral sclerosis (ALS). Gene-based therapies for ALS have potential for the approximately one in eight patients...
Amanda Judice was doing what many college students like to do on semester break – enjoying a winter ski trip. Then, her world turned upside down, and not from a tumble on the slopes. The 20-year-old product of Fatima and St. Thomas More, a Delta Delta Delta sorority member at...
At the start of the year, pharmacy benefit manager OptumRx predicted that 40% of all new FDA-approved products in 2020 would be orphan drugs. The PBM hasn’t changed that forecast, but it has come out with a bold new prediction about drugs that address small patient populations. Developers of orphan...
CAMBRIDGE, Mass. — Count Me In, a patient-partnered research initiative led by the Broad Institute of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients,...
A Lakewood family will bike in the 20th annual Children’s Hospital Courage Classic to help raise money for the medical center that has treated their son since birth. Stefan and Brenda Van der Steen will take part in the 3-day tour, which passes through Copper Mountain and Leadville for three...