It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…
HSG 2017 is coming your way Denver! The Huntington Study Group (HSG) is a global professional group dedicated to finding better treatments and ultimately a cure for Huntington Disease (HD). They…
Amber and Ryan Dollinger were preparing for the birth of their second son just as Hurricane Harvey was plowing toward them dead-on. They fled their Beaumont, Texas home and found…
This is the story of Eddie and Sarah Yang, their children, and challenges they face with a rare disease called congenital central hypoventilation syndrome (CCHS). Eddie and Sarah married in…
In a small UK Village, locals will be congregating at a popular pub to raise money for a disabled and epileptic boy whose family cannot afford his medical gear. Microcephaly…
Sometimes it takes a tragedy to create real change. Last year, Connecticut joined the short list of states to implement an ALD newborn screening test, after the parents of a…
How often do you reflect upon all the genuine reasons to be grateful? What prompts you to shift your focus from the sense of self to others? Do you find…
Dealing with a tragedy such as a brain tumor poses a great challenge to relationships. In this rare occurrence, a young couple from England were both diagnosed with a brain…
In Hartford Connecticut, 12-year-old Emma Becker has been fighting the brave fight against cancer for the last four years. Her condition: Neurofibromatosis, a condition that causes growths of tumors to…
According to a lovely post on the International Waldenstrom's Macroglobulinemia Foundation website, Julianne married the love of her life at the age of 19; her husband John was 30. In…
It's called Hereditary multiple exostoses (HME). Yes, quite the mouthful. Our friendly neighborhood scientists at Children's Hospital of Philly (CHOP) have been working diligently to study this rare bone disease…
Neuroblastoma has been one of those rare diseases that affects the youth and nobody messes with our future generation! This form of cancer weasels its way and burrows deep in…
While cliché, it is still true that children are the future. That is why it is so important that we find ways to protect them where we can and prepare…
Pack your bags LGS Warriors, your conference is headed to Orlando, FL this November! The LGS Foundation is holding it's fifth International Family and Professional Conference to promote collaboration between LGS…
PW Partner the Amyloidosis Foundation (AF) is hosting their annual amyloidosis research benefit and you won't want to miss it! The AF was founded by two amazing amyloidosis patients who strived…
Researchers who study rare diseases often look at what's going wrong in the body in order to find a treatment. But the team studying rare lung diseases at the Perelman School…
This year, The International Advocate for Glycoprotein Storage Diseases (ISMRD) has moved their International Conference from the US to Rome, Italy! The ISMRD is a non-profit who aims to be…
A recent report from the Food & Drug Administration reveals renewed efforts for the treatment of one of the rarest forms of non-Hodgkin's Lymphoma, Mantle Cell Lymphoma. Due to promising advancement…
Zika! It was the talk of the town during 2015-16 and has thus quieted down, but the virus still lingers and scientists are still working to combat it. A quick…
Care to be inspired today? There's a group of inspirational world-changers named SpringWorks Therapeutics. These pioneers are on a mission to unite scientists, biopharmaceutical partners, patient groups and philanthropists to…
Anyone who has had any contact with the United States' court system can tell you how overloaded and rushed it is. Criminal and civil trials will often have to be…
When raising children, parents spent a lot of time discussing the challenges of child-rearing with others, reading articles and books, and wondering if we were doing the right thing in…
Des Moines news anchor, Elizabeth Klinge, is receiving quite the social media buzz after posting heart-warming photos of her daughter Hanalay and her notable port-wine stain. The photos garnered a…
The first story that comes to Quentin's mind about a turning point in his life is about his attendance at a school for the blind. When Quentin lost his vision…
I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, It’s a way of looking at life through the wrong end of a telescope.…
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