While the five-year survival rate for adenoid cystic carcinoma (ACC) is relatively high, this cancer has a high risk of recurrence. Therapeutic options are needed to manage this cancer and…
Stacey and Jason Chappell love their large family; there’s nothing they enjoy more than spending time with their five children, sometimes even going on fun vacations. But Stacey feels nonplussed…
16-year-old Tae’Von Perry has always been incredibly active in his local community: from acting as a worship leader at Encounter Church to singing, playing sports, and dancing with Company D.…
In early stages, renal cell carcinoma (RCC) is treatable and has a high five-year survival rate. However, if the cancer progresses or metastasizes (spreads), the five-year survival rate falls…
March 24 is being recognized this year as Lipoprotein(a) Awareness Day, a time to spread awareness among the general public and the medical field about elevated lipoprotein(a), a condition which…
Receiving a diagnosis can be difficult, and when you add into the equation that it’s for a rare disease, it can be a very lonely and isolating time. There is…
Contributed by Critical Path Institute (C-Path) and republished by Patient Worthy - find the original source article here. C-Path’s CDRC is positioned to inform future clinical trials for diseases of…
Prior to February 2023, there were no FDA-approved treatment options for non-central nervous system manifestations of alpha-mannosidosis. But in mid-February 2023, Chiesi Global Rare Diseases shared via news release…
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…
As reported by Valley News Live, Senator Amy Klobuchar (D-MN) has long been a supporter of the rare disease community. In the past, Senator Klobuchar has spoken at virtual press…
Nathan Barnica has always held a keen interest in and passion for bowling. He has honed his skills over the years through involvement in different team leagues. But in 2018,…
At the end of February 2023, workers at the Escanaba Billerud Paper Mill began feeling ill. Their symptoms were reminiscent of atypical pneumonia; some people struggled to breathe. According to…
Right now, there are a number of therapeutic options for people living with Waldenstrom macroglobulinemia (WM), such as chemotherapy, immunotherapy, radiation, plasmapheresis, stem cell transplantation, and targeted therapy. However, these…
Currently, an estimated 47-50% of global nasopharyngeal carcinoma cases occur in China, with the regions of Guangdong, Guangxi and Fujian being heavily affected. There are a number of treatment…
According to a story from people.com, beverage entrepreneur and former star on Real Housewives of New York City Bethenny Frankel has taken to the social media app Instagram to share…
Raising rare disease awareness is incredibly important - not just to spur research, but to validate the experiences of those within this community. Around Rare Disease Day on February…
Cases of multiple myeloma seem to be rising across the country and the globe. New and effective therapeutic interventions have the potential to significantly benefit this patient population. Ichnos Sciences…
At the 2020 Olympic Games (held in Tokyo in 2021), British rugby sevens player Abi Burton gave it her all. Coming from a rugby background, Burton wanted to ensure that…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
According to a story from sciencex.com, Queen's University Belfast, University College Dublin, and a team of 33 other partners have come together to start the All-Ireland Rare Disease Interdisciplinary Research…
For the first two years of his life, Rafe Hibben seemed to be progressing like a relatively healthy little boy. But when he was two years old, Rafe’s health went…
Autumn Carolino’s journey began with a stomach ache that just never seemed to go away. Paired with high fevers, the two-year-old’s health seemed to be going on a downward spiral.…
Could an ocular implant be an effective therapeutic solution for individuals living with noninfectious uveitis? According to an article in HCP Live, the answer seems to be yes. A study…
Also known as Lawrence syndrome, acquired generalized lipodystrophy (AGL) is an ultra-rare condition characterized by the destruction or loss of adipose tissue. Given the small population size, AGL is…
According to a story from koin.com, graft-versus-host disease is a condition that can affect recipients of stem cell or organ transplants. Dr. Corey Cutler, Medical Director, Stem Cell Transplant Program,…
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