The National Organization for Rare Disorders (NORD) is hosting its 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit on October 21-22 in Washington, D.C. NORD is a great organization and…
Talk about a bittersweet symphony! Published on Yale University's online paper, recent grad Jordan Plotner -- who is living with Ehlers-Danlos syndrome (EDS) -- organized a virtual musical ensemble with other…
The FDA announced last week that it has approved Rituxan (rituximab)to treat granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA) in children 2 years of age and older in combination…
According to the British publication The Sun -- a woman's rare disease diagnosis slowly saw her nose collapse - and her nostrils close completely. Following a seizure, Savannah-Kelly Simmonds was diagnosed…
Alnylam Pharmaceuticals has developed and produced a cartoon series aimed at educating people -- especially young people -- about the pediatric rare disease primary hyperoxaluria type 1 (PH1). The campaign…
A minimum of seven people have died after contracting Eastern Equine Encephalitis (EEE), a rare disease carried by mosquitoes, bringing number of total people affected to 27 in six states.…
September 25th is International Ataxia Awareness Day! The National Ataxia Foundation (NAF) has great resources to help spread the word and show our solidarity for the Ataxia patient community; on…
September 24th is Familial Hypercholesterolemia (FH) Awareness Day! Let's take a closer look at FH, and how we can help make this day productive for the FH -- and rare…
Some promising news for the congenital adrenal hyperplasia (CAH) community! Spruce Biosciences is one step closer to a treatment for CAH after new phase 2a data showed the drug reduced…
Accio Expecto Patronum! With a wave of a wizard's wand, iconic Harry Potter author J.K. Rowling has done an incredible service to the multiple sclerosis community, by donating over $19…
Patient Worthy has written extensively about Dr. David Fajgenbaum, who has made it his life's mission to find a cure for Castleman Disease. Dr. Fajgenbaum is not only diagnosed with…
Sometimes through tragedy and hard times, a beacon of hope can emerge. After months of struggling with a rare aggressive disease, toddler Chloe Barnes passed away in 2008 in Minnesota.…
September is Tyrosinemia Awareness Month! The good people of the Network Of Tyrosinemia Advocates (N.O.T.A.) have organized a family weekend later this month aimed to bring the Tyrosinemia community together. Let's…
The Advisory Committee on Heritable Disorders is hosting a webinar on September 24, as part of its mission to reduce morbidity and mortality in newborns and children who have, or are…
Last week, we spotlighted a New York Times story about how under the Trump Administration’s new immigration policy, six migrants undergoing lifesaving treatments would be abruptly deported; including a young woman…
The New York Times reported that under the Trump Administration's new immigration policy, six migrants undergoing lifesaving treatments have received deportation letters; including a young woman battling a rare disease.…
Recently, Good Morning America demonstrated the importance of showing children with disabilties examples of diversity in the media. Carolyn Anderson shared with the popular morning show how her 4-year-old-daughter Maren…
According to a report by the Spanish newspaper El País, over a dozen children in Spain have recently been diagnosed with the rare condition hypertrichosis -- also known as werewolf…
Netflix debuted a documentary series this month called 'Diagnosis' -- based on a New York Times Magazine column -- which follows individuals with or caregiving for patients with a mysterious,…
Aevolve, a medical innovation platform, announced last week that it will be making rare disease research a top priority in its blockchain-powered accelerator, which provides a pathway for alternative funding…
It was announced late last week that Justice Ruth Bader Ginsburg had just completed three weeks of radiation treatment for tumors on her pancreas. Pancreatic cancer occurs in the pancreas, an organ…
Hey Patient Worthy community - let's help a young girl with aplastic anemia find a bone marrow donor! Nine-year-old Emma Hall needs our help - so let's see what we…
Are we ready for our close-up? The second annual Selections from DISORDER: The Rare Disease Film Festival at Biotech Week Boston will be held at the Takeda Auditorium in Cambridge,…
Groups like Cure SMA, the Cystic Fibrosis Foundation, the Muscular Dystrophy Association, Parent Project Muscular Dystrophy (PPMD), and the National Organization for Rare Disorders (NORD) have a mission: The United States Senate…
We love a good story about a community coming together! Firefighters across the Atlanta area came together to support a retired fire chief who has been partly paralyzed after being…
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