The advocacy group Just Treatment recently published a press release titled 'BREAKING: Cystic Fibrosis Patients Launch Global Challenge to Vertex Monopoly on CF Drugs.' Vertex Pharmaceuticals has taken the lead…
This week the family of actor Bruce Willis announced that he received a diagnosis of frontotemporal dementia (FTD), a rare disease that causes behavioral changes, language, speech, and memory…
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…
On the field, Running Back (RB) Tevin Coleman has done some amazing things. He has played in 94 games, gained 3,319 rushing yards, and scored 25 touchdowns. Off the…
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…
509 words 8% matched vs 786 words 5% matched A new study recently appeared in the publication The Conversation written by authors Laura Whitworth, Group Laboratory Manager, and Prof. Lalita…
Researchers are closing in on cancer from every angle. Recently a team at the Colorado University (CU) Cancer Center has been focusing on p53, a common gene mutation found…
Stat News recently published comments by Bruce Bloom, collaboration officer at Healx, Cambridge, UK heralding the major advances in the treatment and the study of rare disease during 2022.…
For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…
Early identification and diagnosis of cancers or rare conditions can significantly improve patient outcomes. For example, early ovarian cancer detection contributes to a better prognosis. Yet many women remain…
Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…
Before you read on, make sure to check out Part 1 of Sarah's story. In Part 1, Sarah discusses the traumatic (and life-threatening!) odyssey that led to her eventual Addison's disease diagnosis…
Scientists are always looking into new ways to advance treatments and improve patient outcomes, especially in disease states with high mortality rates. Currently, ovarian cancer is associated with a…
When she was just 26 years old, Lisa McNeil had a pulmonary embolism (a condition in which a blood clot gets stuck in an artery in the lung, blocking…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
When Sarah Williams Maxwell was 18 months old, she was diagnosed with type 1 diabetes (T1D). Outside of managing this condition, Sarah was relatively healthy until 2014, when her diagnostic…
The Schleswig-Holstein University Hospital and the Max Planck Institute in Germany have investigated a hereditary condition that is extremely rare called brachyphalangy, polydactyly, and tibial aplasia/hypoplasia (BPTA) syndrome. Symptoms…
Before you read on, make sure to check out Part 1 of Kristin and Kayden's story. In Part 1, Kristin discusses the diagnostic journey and how Kayden was diagnosed with a dermal…
Two Southern California University studies showed a reduction of neurodegenerative activity in amyotrophic lateral sclerosis (ALS) research models with each using a different treatment route. As reported in Inside Precision…
Charlie and Megan Hieb would do anything to help their daughters, Nora and Lucy. They would truly go to the ends of the earth to ensure that their daughters…
Patients want to be an integral part of drug development. Their voices have been heard on many topics ranging from the importance of Newborn Screening, choosing meaningful endpoints and meaningful…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Previously known as Marburg hemorrhagic fever, Marburg virus disease (MVD) is a rare but serious viral hemorrhagic fever with sporadic outbreaks occurring in South Africa, Ghana, Zimbabwe, Uganda, Kenya,…
The Lashoff family loves living in St. Louis; they’ve been there for six years and can’t get enough of it, from watching hockey at the Enterprise Center to marveling at…
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