Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
CureDuchenne, the nation’s leading nonprofit dedicated to funding a cure for Duchenne muscular dystrophy (DMD) and a Patient Worthy partner, held its first “Napa in Newport” event in 2015;…
The Mississippi State University (MSU) Bulldogs joined forces with Children’s of Mississippi, the state’s only children’s hospital with statewide pediatric clinics, to honor pediatrics patients throughout Mississippi, sharing and uplifting…
The American Academy of Dermatology (AAD) held its Annual Meeting from March 17-21, 2023. During the meeting, stakeholders from the dermatology community connected to discuss clinical practices, research trends, and…
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 families,…
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…
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…
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…
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…
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…
For the last eight years, the National Organization for Rare Disorders (NORD) has developed a State Report Card; the goal of this project is to evaluate the effectiveness of…
Lia Porcano was born in March 2018—and her parents Rosalyn and Justin could not have been more excited. But when Lia’s newborn screening test came back abnormal, the parents’ concern…
There are many rare or congenital diseases that, without early detection and treatment, can cause serious health issues and complications. For example, early treatment of homocystinuria (HCU) could delay or…
Eight years: that’s how long it has been since Moxie Garrison was diagnosed with Marfan syndrome. Now nine years old, the spunky and resilient third grader approaches every challenge head-on.…
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