On July 27, 2022, the National Organization for Rare Disorders (NORD) hosted an online webinar titled "Drug Development for Rare Diseases: A Community Conversation." This program was designed to help…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this month is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
On July 28, 2022, the Rare Disease Legislative Advocates (RDLA) hosted their monthly webinar for July. As always, these recurring meetings help provide critical updates to the rare disease community…
When Caroline Cheung-Yiu's son Alex started to walk around age two, it was clear that he was struggling with his balance and coordination; but instead of improving, his issues started…
According to a story from ozarksfirst.com, Jamie Simoson was taken completely by surprise when her three year old son Jonathan started complaining about a headache. As his condition worsened, Jonathan…
Fibrodysplasia ossificans progressiva (FOP) begins with very little warning. When children are born with FOP, they appear normal aside from a possibly characteristic malformation of the largest toe that…
When Stormi Vanden Bosch and Tyler Scotting found out they were expecting another son, they were thrilled. On October 31st, 2019, they welcomed their son Baylor to the world.…
The Catawba Virginia Farmers Market’s mission is to provide the Catawba community with local produce and handicrafts. Stephanie and Donald Schneider owners of Pacaberry Farms have been vendors at the…
Written by Molly D'Angelo I’m like most parents in that I never want to see my children hurting physically or emotionally. We would do anything to prevent their pain—put a…
In 2020, Anthony Di Laura and Jackie Cucullo were over-the-moon. The married couple had just learned that Jackie was pregnant with their first child. Anthony and Jackie were thrilled…
Continued From Part One Written by Becky Tilley Finally I found a role that I was appreciated in, at least by the kids. I wasn't very welcome by the girls…
Danielle Morley of Radcliffe, UK, has been an advocate for plasma donation ever since being diagnosed with a rare blood disorder called immune thrombocytopenic purpura (ITP) during her first…
When Eleni was first born, doctors and nurses told her parents, Neil and Eloise, that their daughter would most likely not survive. That’s because Eleni had been diagnosed with…
12-year-old Rohit, who hails from Uttar Pradesh, India, has a dream to one day become a singer – and he’s ready to pursue that dream no matter what. Throughout…
When Nicole Croxton and Pete Nappi first learned that they were going to have another daughter, the pair were thrilled. But during the course of Nicole’s pregnancy, doctors filled…
One thing is sure: 29-year-old Aimee Read was always a fighter. At just two years old, Aimee was diagnosed with leukemia. After two years of chemotherapy and six months…
The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person…
Written by Derek Zinser, Author Bravery Books and the story of Sir Roland's BIG Adventure came about from the loss of my father to cancer on New Year's Day in…
The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person…
In 2019, Courtney and Michael Henderson welcomed the newest member of their family – their son Luke. They were thrilled at this new addition, who they say is one…
June 30, 2022 will be recognized as Arthrogryposis Multiplex Congenita (AMC) Awareness Day, a time to spread awareness about arthrogryposis multiplex congenita among the general public and in the medical…
The medical term for an “informal caregiver” describes a person who willingly takes the responsibility to help a spouse, family member, friend, or partner. The level of care and responsibility…
On June 10, 2022, Patient Worthy partner GACI Global hosted an hour long webinar on the subject of hearing loss, featuring Dr. Karen Wilber. GACI Global is a nonprofit organization…
The month of June is recognized as Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month, a time to spread awareness about the rare condition among the general public and the medical…
June 19, 2022 will be recognized as World Sickle Cell Day. This international event is intended to help spread awareness about sickle cell disease among the general public and in…
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