First established by the International Foundation for Gastrointestinal Disorders (IFFGD) in 2016, Gastroparesis Awareness Month is designed to increase awareness of gastroparesis and how it affects the people who…
Each summer advocates for rare diseases take advantage of longer daylight hours and use the opportunity to showcase the hopes, needs, and wants of people with rare diseases such as,…
Written by Jennifer Sills, Founder, CSNK2A1 Foundation If you know me, you know I have had an unconventional life, to put it mildly. More than anyone, I know that life…
NOTE: This story was provided through the CureGRIN Foundation, a Patient Worthy partner organization. Written by Lauren Williams Why Me, Why Not A question I struggled terribly with at the…
Patient Worthy partner Chelsea's Hope is a nonprofit organization dedicated to supporting families impacted by the deadly rare illness Lafora disease, as well as amplifying research. Recently, a documentary titled Fighting…
Note: These quotes and reflections are from members of the cystinosis community who were in attendance at the 2023 Cystinosis Research Network Family Conference which took place in Nashville, TN…
14 touchdowns. 11.6 yards per carry (on average). 1st Team All-Conference. These accolades show how hard Luke Winterbottom, an all-league running back for Plymouth Whitemarsh High School, worked during…
The incidence of gastroschisis has doubled over the past 20 years. Read “Jeanie’s Gastroschisis Baby” and learn from a brave, young first-time mom about discovery and how Gastroschisis can be…
On June 21, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…
According to a story from statnews.com, a new documentary film from Elle Brooks-Tao titled "I'm Not Crazy, I'm Sick" delves into the stories of three people living with long-term Lyme…
According to a recent article in People Magazine, this Illinois family has a dream: to turn amyotrophic lateral sclerosis (ALS) from a fatal to a chronic illness in Brian’s…
Nobody expects to hear that their child, especially their baby, has cancer. But that is just what Chris and Carney Miller were faced with in 2023. The Miller family…
Uplifting Athletes, a national nonprofit organization that harnesses the power of sport to support people impacted by rare diseases, celebrated 20 years of Lift for Life with Penn State University…
June 30th is World Pneumothorax Day and this year we are urging all doctors to ask about family history if a patient presents with a spontaneous pneumothorax. This one…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
June 17th is International CDKL5 Day. During the month of June let’s tag every day with a reminder to those in the CDKL5 community to promote collaboration and fundraising.…
Written by Lacey Woods From a young age, I knew I wanted to be a mother, to have biological children and also to adopt. This desire stayed with me throughout…
According to a story from CBS News Boston, Scarlett is just six years old and was recently hit with a devastating diagnosis: Batten disease. Unfortunately, very little can be done…
John knew from an early age that he not only loved music but had confidence in his musical ability. However, there was another very troubling issue in his life. John…
The month of May is recognized as Prader-Willi Syndrome (PWS) Awareness Month, and May 27th is International PWS Day. This is a time to spread awareness about this rare disease…
Written by Libby Wilson- Mommy, Living with Stage IV Breast Cancer Dear Violet - Before I met you, I never loved someone with every morsel of my being. I never…
Lyme disease is an illness caused by Borrelia burgdorferi (B. burgdorferi) bacteria that is transmitted through the bite of an infected deer or western blacklegged tick. If you live…
May 7, 2023 will be recognized as Cystinosis Awareness Day. This will be a day to spread awareness about the rare disease cystinosis among the general public and the medical…
On April 26th, I had the honor of speaking at the American Brain Foundation’s Commitment to Cures fundraising dinner during the American Academy of Neurology annual convention in Boston. I…
Written by Salem Taylor My name is Salem, I’m 43 years old, live in North Carolina and have hyperkalemic periodic paralysis. Growing up as a tall, awkward home-schooled kid was…
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