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 ...
Oregon health officials investigate rare brain disease blamed for two deaths
Health officials in Hood River County, Ore., are investigating three cases of Creutzfeld Jakob disease. Two have died and a ...
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 ...
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 ...
STAT8d
I don’t know what I’m supposed to call my rare kidney disease
I care deeply because this chronic disease is mine. It lives inside me. It’s radically changed my life and the life of my ...
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 ...
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 ...
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 ...
Rare mad cow-like brain disease kills 2 in Oregon
Creutzfeldt-Jakob disease, which is related to mad cow disease, has resulted in two deaths in Oregon, according to the Hood ...
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 ...
Rare disease attacked Fairhaven woman's eyes, brain and kidneys. A neighbor saved her life.
Nellie Zygiel of Fairhaven has battled illness much of her life. Diagnosed with a rare disease, her life has been saved ...