, organized by the EveryLife Foundation for Rare Diseases, is one of the most important annual advocacy events for the rare disease patient community. The event is held the last…
Contributed by Scott Gray. Scott Gray is the co-founder and CEO of Clincierge, a provider of patient support services for clinical trials. Since 2015, Clincierge patient coordinators have managed logistics and reimbursements in…
Introduction I am a 50-year-old woman from the UK who has been suffering with an undiagnosed condition for 11-years for which I am seeking a diagnosis and medical treatment. I…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Read Parts 1 and 2 of Katie's story, where we discuss the diagnostic journey, precocious puberty, and Katie's ZMYM2-related disorder diagnosis. Potential ZMYM2 Symptoms and the Need for Research The geneticist mentioned that symptoms…
February 28th is recognized as Rare Disease Day around the world each year. This day is intended to bring recognition and awareness to the plight of the millions of people…
Make sure to check out Part 1 of the Schroeder family's story before reading further. CURED Currently, the Schroeder family is doing as well as they can to manage and to ensure…
Before you read on, make sure to check out Part 1 of this story. What is Shwachman-Diamond Syndrome (SDS)? First identified in 1964, Shwachman-Diamond syndrome (SDS) is a rare inherited condition that…
When asked about the key way that the medical field can better serve patients, Pari Schroeder doesn’t waver: multidisciplinary care. She acknowledges that the medical system can often be very…
In the first year after her daughter Nora’s Shwachman-Diamond syndrome (SDS) diagnosis, and her daughter Kayla’s subsequent diagnosis, Lisa Superina raised over $130,000 towards SDS research. She held a comedy…
Contributed by Jane Larkindale and Alayna Tress While millions of people globally are living with a rare disease, patients often find it difficult to feel seen or heard throughout their…
Before you read on, make sure to check out Part 1 of our interview. In Part 1, Kyla discusses the two-year diagnostic odyssey that brought her to the point of her Gleich…
Make sure to read Part 1 of Kandise's story. In Part 1, she discusses some of the symptoms of hereditary multiple exostoses (HME), as well as how she finally reached a diagnosis.…
At nearly 33 years old, Kyla McGaughey has overcome more challenges that many people can imagine. Her medical journey began in 2019 and it took over two years for her…
When Richard Poulin's daughter Rylae-Ann was born, it wasn't long before he and his wife began to wonder if something was wrong. They both felt confident in understanding the…
Ready to read? Before you do, make sure to check out Parts 1 and 2 of Tracy's story. In Part 1, Tracy describes the symptoms that led her to pursue a diagnosis. Part 2…
Before you read on, make sure to check out Part 1 of Tracy's story. In Part 1, Tracy discusses the symptoms that led her to pursue a diagnosis and the multi-year diagnostic…
When Kandise MacLeod was twelve years old, she began noticing various growths and tumors popping up on her bones. These sometimes caused pain or discomfort; in one case, Kandise even…
Before you read on, make sure to check out Part 1 of our interview with Christina ("Chris") Coates. In Part 1, we discussed Chris' Cavernous Malformation, surgery, and diagnostic journey to hypertrophic…
Ten years ago, Tracy Kyttle moved from New England to the DC Metro Area to pursue a career in education leadership. She loved the area’s duality: its proximity to nature…
Before you read on, make sure to check out Part 1 of Laura's story. In Part 1, Laura shares the diagnostic journey, why her family is so rare, and what Carpenter syndrome…
Before you read on, make sure to check out Part 1 of Savannah's story. In Part 1, Savannah's mom Lacey shared the diagnostic journey that led to Savannah's diagnoses: EoE, LGS, and…
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