According to a story from the Wall Street Journal, the U.S. healthcare system might be able to learn a thing or two from Netflix. A well understood aspect of healthcare…
According to a story from PressReleasePoint, a new partnership has developed to generate artificial intelligence technology that will help diagnose people with a variety of rare diseases. The partnership consists…
According to a story from fiercebiotech.com, the gene therapy startup Generation Bio managed to fundraise $100 million in a little over a month. In its prior series A round of…
Just yesterday, the incredibly successful actor Irrfan Khan, announced on twitter that he just found out he has a rare disease, reported The Guardian. Khan has appeared in over 100…
Macey Brietenback continues to defy all odds. Originally reported by CBS Baltimore, the teenager lives with a condition that prevents her from digesting food. Even though it has given her…
Happy Friday, Patient Worthians! Today, we're highlighting a story about the donors who sacrifice their kidneys for rare patients, an update on CF research, and an exciting orphan drug designation.…
Making big changes to your eating plan can present a challenge for some. Now, factor in having hemochromatosis—a rare condition characterized by the buildup of iron—and you’ve got the ingredients…
Many runners shared their inspirations after the Little Rock marathon this week. Among them Nancy Gifford, a thyroid cancer survivor, finished the race. Keep reading to learn more about her…
33 rare disease organizations across the country have teamed up for $1 million fundraising goal during the months of February and March to fund research and support patients, in honor…
Adrenoleukodystrophy is a rare hereditary condition which affects the myelin sheath and the ability of the body to process a type of fatty acids. The most damaging form primarily affects…
The final day of Rare Disease Week took place at the NIH Clinical Center last Thursday. Admission to the NIH was free, and participants had the chance to tour the…
A new medical educational platform called the HealthVoyager has been released and is now being utilized following a collaboration with the Boston Children's Hospital and Klick Health, reports PR News…
According to a story from Politico, the two legislative bodies of the Virginia General Assembly, the House of Delegates and the Senate of Virginia, passed vastly different budgets last week,…
Alabama Rare hosts the 3rd Rare Disease Day Advocacy Training & State House Advocacy Event in Montgomery, AL. It's a great way for advocates to get connected and meet state legislators.…
People living with sickle cell disease should have a new option for treatment in the not-too-distant future. In addition to the blood transfusions and bone marrow transplants from healthy donors, a…
Happy Rare Disease Week, Patient Worthians! As we wind up after a week of celebrating the rare patient community, support networks, and advocacy, we want to highlight four rare disease…
Last month, 125 rare disease patient organizations sent a letter to Medicaid directors from individual states highlighting the importance of Medicaid access for rare disease patients. "As organizations representing millions…
Alabama Rare is hosting the 5th annual rare disease genetics symposium with intent to educate and advise patients, caregivers and medical professionals on how to manage their disease. March 2nd:…
According to a story from the National Organization for Rare Disorders, patient advocacy organizations are joining forces to send letters to Medicaid directors across the USA to advocate for the…
The Penn Medicine Orphan Disease Center invites you to Rare Disease Day with the 5th Annual Million Dollar Bike Ride in Philadelphia, PA. Cycle with fundraising: FREE Cycle without fundraising:…
Perhaps it is because parents often feel dissatisfied with the results they receive for their children through traditional medicine that they sometimes look elsewhere for treatments to improve the conditions…
Creative parenting. I find such inspiration when I hear about parents digging deep to adapt surroundings (or life) so their kids can deal with it better. A WBTV social media…
According to a story from Newswise, a recent study shows that Merkel cell carcinoma, which historically has affected only a few thousand people per year, is becoming more prevalent, especially…
Jahkee Johnson, a 16-year-old from Cedar Grove High School, is exceptional and accomplished for many reasons, beyond the fact that he tackles challenges and goal without the help of legs,…
Last year, then sixteen-year-old Joshua Martineau who has Kabuki syndrome and Tourette syndrome, had a challenging experience at his local Cineplex. According to ChCh, Joshua was excited to celebrate his birthday. He…
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