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…
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…
When Brianna Terry was just two years old, her doctors gave her a diagnosis of autosomal recessive osteopetrosis. At the time, the doctors were concerned about her wellness; they…
According to a story from the BHD Foundation, Patient Worthy partner The Myrovlytis Trust, along with the BHD Foundation and Pulse Infoframe, are collaborating on an international Birt-Hogg-Dubé (BHD) syndrome…
According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month, a time for spreading awareness about scleroderma among the general public and in the medical field.…
Written by: Tyler Bradley, PFIC Network The PFIC Scientific Conference Held Many Great Presentations and Roundtables That Informed Both The Scientific And Patient Communities. Last month the PFIC Network hosted…
On January 9th, Jacob Wiley was preparing to see his three-year-old daughter Adelaide in the hospital. It was a day that Jacob and his wife Ashley will never forget.…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Tourette Syndrome affects one million Americans. 2022 is the Tourette Association of America's 50th Anniversary, and to celebrate, you can get involved in Tourette Syndrome Awareness Month from May 15th…
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