ABC News and Good Morning America brightened up our morning by featuring a story of 1-year-old Alle Jilg, whose life was saved by total stranger's bone marrow donation. Alle is…
July 13th is GIST Awareness Day! Let's learn a little more about this rare form of cancer, and then see what we can do is raise more awareness! What are…
This bit of 2017 news flew under the radar! But it's worth shining a spotlight! In 2017, Macedonia became the first country in the WORLD to issue a postage stamp…
July is hemochromatosis awareness month - and in its honor, below is some useful information that could provide helpful. One thing to remember about Hemochromatosis is that early detection is…
Seems like we JUST had a presidential election, right? But we're in the dead of summer 2019, inching closer to a presidential election that will once again take over our…
Ten-year-old Pennsylvania boy Josh Shorb has been hard at work raising money -- and awareness -- for a very rare disease he has, in an ultimate show of paying it…
Sun's out, school's closed, summer's in full swing -- let's set aside some time to talk about juvenile idiopathic arthritis in the month of July! What is JIA? Juvenile idiopathic…
China has been making waves lately, improving its efforts to efficiently and effectively provide healthcare for its nearly 1.5 billion population. “Health is a prerequisite for people's all-round development and…
In honor of its 30th anniversary, the National Organization for Rare Disorders (NORD) has announced ten new grants as part of its Rare Disease Research Grant Program! NORD is the…
Meet 29 year-old Cary Velazquez -- make-up artist in Puerto Rico with the rare disease osteogenesis imperfecta (OI), (also known as “brittle bone disease” and “glass bones disease”) who has…
Answer: This iconic game show host - who was diagnosed with stage 4 pancreatic cancer earlier this year - has miraculously overcome the odds, announcing he is in "near remission."…
Mark your calendars! The Rare Disease Diagnostics Summit is being held in Boston, MA on September 24th and 24th, 2019. This incredible event will bring together pharmaceutical companies, biotechs, diagnostics,…
June 10th through 16th is Men Health's/Rare Dads Week! We would like to devote some attention to the rare diseases that affect mostly men - because to quote Congressman Bill…
June is myasthenia gravis awareness month! Myasthenia gravis (MG) is characterized by weakness and rapid fatigue of any of the muscles under voluntary control. It's caused by a breakdown in…
May is Cystic Fibrosis (CF) awareness month! CF is one of the more devastating rare diseases in the community, often affecting children and young people. So let's be extra mindful…
May is Healthy Vision Month! Rare disease or not, maintaining healthy eye health should be a priority for all of us. The National Institute of Health has resources for not…
Behcet’s Awareness Day is May 20th! Behcet’s disease (also known as Behçet’s and Behçet’s syndrome) is a rare condition that causes chronic inflammation which manifests as ulcers (commonly referred to…
May is Myositis Awareness Month! Myositis is the inflammation or swelling of the muscles. There are two primary kinds of myositis: Polymyositis, which causes muscle weakness, usually in the muscles closest…
Thursday May 16th is HAE Day, when we observes the hopes, struggles, and resilience of the Hereditary Angioedema (HAE) patient community! What is HAE? “Angio” means pertaining to blood vessels, and…
May is Cystinosis Awareness Month! During the month (and all year long!) we strive to bring together the cystinosis patient community and their families -- and the Cystinosis Research Network's…
Six weeks ago, Gretchen and Josh of Oklahoma rushed their precious 5-month-old Opal to the hospital after she became extremely sick from a cold. It didn't take doctors too long…
April 15th is International Pompe Disease Day! The International Pompe Association (IPA) is an organization of Pompe disease patient groups that seeks to coordinate activities and share experiences worldwide. The…
Any fans of RuPaul Drag Race or the art of drag itself? Raise your manicured hand! Well, regardless of your answer - watch how the world of drag and rare…
Wisconsin; the land of beer, cheese, good-hearted people, and Maria Voermans - rare cancer survivor and now fierce advocate for the rare disease community. Ten years ago, Maria had the…
"...just like 50,000 other people in the United States each year, this week I was diagnosed with stage 4 pancreatic cancer." Alex Trebek - who has has hosted the…
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