Rare Disease in the News
Papillion Fire Department Helps Raise Money for Boy with Rare ...
A local boy battling a rare disease is getting some help from the Papillion and La Vista Fire Departments.
Pancake feed raises money to find cure for terminal disease
Amryt secures €20M to fund pivotal rare disease trial | FierceBiotech
Amryt Pharma has secured a €20 million loan from the European Investment Bank (EIB) to fund a pivotal trial of its lead candidate in epidermolysis bullosa.
'Fight with Nathan': Help sought for baby with rare disease
Now, a Filipino couple is hoping the same platform can help save their baby. Judith and Archie Riva are banking on help from strangers online, to save their newborn baby Nathan, who has a very rare disease. Nathan was born full term, weighing 8 lbs ...
Rare disease affects Deer Lake twins, family tries to stay strong
A Deer Lake family has spent weeks at the Janeway Hospital, where their infant daughters are being treated for a rare and usually fatal degenerative disorder. Freya and Autumn Chynn, identical twins born on Valentine's Day in 2016, have Krabbe's ...
Doctor with rare Castleman disease works to find cure - CBS News
Dr. David Fajgenbaum is both a physician and patient with Castleman disease, and he's heading up a database to help increase understanding of the often ...
Doctor Now Studying Rare Disease That Nearly Killed Him - Newser
When David Fajgenbaum's mother died of brain cancer, the Georgetown University student founded Students of Ailing Mothers and Fathers in 2007 to cope.
Shire plots rare disease 'innovation hub' in Kendall Square
Shire is expanding its innovation play in Cambridge, MA, as it looks to boost its presence in Kendall Square and create a 550,000-square-foot campus focused on rare diseases. The Irish-HQ'd biopharma said it has penned a new lease with BioMed Realty ...
Shire Expands Kendall Square Footprint with Rare Disease Innovation Hub
Shire to Establish Rare Disease Innovation Hub in Cambridge, Mass.
Shire to lease massive Genzyme building as part of Kendall Square ...
Transition of Rare Disease Patients to Adult Care
Marshall L. Summar, MD: Hi. I'm Dr Marshall Summar, Chief of the Division of Genetics and Metabolism at Children's National Medical Center in Washington, DC. We're here today at the National Organization for Rare Disorders (NORD) Rare Disease Summit ...
New Jersey nursery donates Christmas tree sales to boys battling ...
The holiday season has arrived, when revelers hit the stores or sidewalks searching for that perfect Christmas tree.
Hope for Elkhorn boys with rare disease
"We see ourselves now as an instrument to push this forward…and to give hope to others,” said their mother. “If you have a rare disease, it's not the end of the story." The Adam Boys leave for California this weekend. You can follow along on their ...