News

Rare diseases often go undiagnosed or untreated in parts of Africa. A project seeks to change that
She visited Fann hospital in Dakar, where neurologist Dr. Pedro Rodriguez measured her lung capacity. He suspects Mariama had ...
Genetic medicine can leave people with rare mutations behind. But there's new hope
People with diseases caused by rare mutations have fewer options and poorer prospects than other patients despite rapid ...
New DNA-reading technology holds promise for rare disease research
Cutting-edge DNA mapping technology has identified new genetic information that can help researchers decipher more genetic ...
STAT1dOpinion
NIH cuts will set back research into the rare disease that has terrorized my family
Jim Higgins has an inherited cancer syndrome that has killed his father, sister, and two daughters. He fears NIH cuts will ...
She saw 26 doctors and had 37 procedures with no diagnosis in sight. Then, an answer.
Nika Beamon set out on a journey, and 26 doctors, 37 procedures and more than 17 years later, a rheumatologist finally ...
Hundreds come together for Denise D’Ascenzo Foundation’s Walk to Fight Rare Diseases
The Denise D’Ascenzo Foundation bringing together about 300 people, including families of those battling rare diseases to raise money and awareness for the cause. Alex Bode is the executive director ...
My dad died of a one-in-a-million fatal disease. I live with the trauma.
When you’re in the middle of running, you shouldn’t have to tell yourself your legs work. But when your dad lost control of ...
South Carolina Public Radio4d
Advances in treating rare diseases in children
This week Bobbi Conner talks with Dr. Neena Champaigne about advances in treating rare diseases in children. Dr. Champaigne ...
Local woman with rare disease spearheading effort to educate more people about handicapped parking spots
A local woman with a rare disease is leading an effort to draw awareness to an issue that’s important to her and others who ...
2 dead from rare mad cow-like brain disease in Oregon, county health officials say
The Hood River County Health Department confirmed April 14 that two people have died from a mad cow-like illness called ...
MedPage Today on MSN3d
Groups Decry Loss of Funding for 'Critically Important' GI Disease Network
Physicians and patient advocates are sounding the alarm after the NIH abruptly withdrew a grant renewal application for the ...
Live Science3d
La Crosse virus disease: The rare mosquito-borne illness that causes deadly brain inflammation
Affected populations: La Crosse virus disease is a rare viral illness that is spread to humans via mosquito bites. The name comes from La Crosse County, Wisconsin, where the disease was first ...