National Drug and Alcohol Facts Week is the last week of January. American Heart Month is February. And October is the sentinel month for people with achondroplasia aka dwarfism. October…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
James Moran suffers with Stickler syndrome and with it, is writing a new play to get in touch with his humanity The Assassination of Pope Urban II is a piece…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
It's Guacher Disease Awareness Month! According to eurogaucher.org, International Gaucher Day was a success! This year it was observed on October 1st to bring awareness to Gaucher disease. The European Gaucher…
According to a late-summer press release sent out by the companies, two pharma players are joining forces and making waves in gene therapy for hemophilia A. Sangamo and Pfizer announce…
David Church is a 21-year-old Professional Billiards player and he has the will power of a Saint. He suffers from Moebius syndrome, an extremely rare neurological disorder that causes severe…
At first glance, little Victoria Thompson looks like your average happy and healthy toddler. You'd have no idea that once upon a time, she had a tumor on her kidney…
Every year, hundreds of people in America are infected with babesiosis, a tick-borne infection that causes malaria-like symptoms. For some reason, older white men have the highest rates of infection.…
Rare disease research can feel like an uphill battle. First of all, rare diseases have a harder time receiving funding. After that, it takes months or even years to have…
Let's talk medical foods, shall we? For those of you who haven't heard of them, a medical food is a food that is created in order to be eaten or…
The memories we have of growing up should be the type that we look back on and smile about. That is not to say that they all should be happy…
The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
Some breathtaking things are happening in the world of sickle cell anemia (SCA) that could potentially impact the lives of nearly 275,000 babies around the world and nearly 100,000 African…
Brock Chadwick is a Halloween enthusiast and his love for all things spooky has shot around the world. Brock's parents asked strangers to send him Halloween greeting cards in order…
How far would you go to eradicate a disease that impacts millions of lives? Would you cross the ethical line if it meant ending a source of suffering forever? Or…
Suffering alone with a rare, chronic condition is a terrible thing. But thanks to the National Porphyria Registry people living with this vexing disease have a way to stand up,…
Phoenix Richey was living a happy and healthy life until things escalated toward the unexpected. During a tumultuous 24 hour period, a strange allergic reaction spread along 65 percent of…
The clock is ticking. If you or someone you love is diagnosed with a rare disease like hypoplasminogenemia, days -- often even hours -- can mean the difference between life…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
Parenthood is one of the greatest joys for most people. But for Fanny Vlahos, a young Michigan woman, holding her infant son is nothing short of miraculous. Vlahos has cystic…
Sickle cell anemia results from a single mutation in the hemoglobin gene. The mutation creates a protein which has an atypical structure. This altered structure throws a wrench in the…
Behind her smile of gleaming baby teeth and her bright, sparkling eyes hides a deadly disease. Sweet Iris has a rare condition; one she can barely pronounce—juvenile GM1 gangliosidosis. Yet…
When we think of disabilities, a cane, walker or wheelchair may come to mind. Or perhaps you think of someone who is blind or deaf or has a learning disability.…
Those that suffer from Acute Myeloid Leukemia (AML) undergo an arduous chemotherapy process and stem-cell transplant. It doesn't seem to be enough as the American Cancer Society states that only…
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