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.
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,…
Prior to the end of March 2023, ganaxolone had received six separate Orphan Drug designations from the FDA; more recently, as shared in a news release from commercial-stage pharmaceutical…
Medical research is incredibly important, especially within the rare disease community. Rare conditions tend to be under-researched and under-funded; this can make it difficult not only to better learn…
In the past, there has been limited research exploring the presentation of melanoma in Asian American and Pacific Islanders (AAPIs). Recent research has sought to explore this relationship and…
In 2022, only around 63 cases of ECHS1, an ultra-rare metabolic disorder, were reported around the globe. A study published in the Annals of Clinical and Translational Neurology in 2015…
What is the actual prevalence of atrial fibrillation (AF) on a local, national, and global scale? While this question may seem straightforward, the answer is not. An estimated 33% of…
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…
Drug development within the rare disease space can be tricky. In many cases, there is a general lack of research and understanding around these conditions; as a result, many…
In 2022, the U.S. Food and Drug Administration (FDA) examined the potential of approving palovarotene, a selective RARγ agonist, for the treatment of fibrodysplasia ossificans progressiva (FOP). However, the FDA…
In 2014, Adam Tate was a college student who was working as a scout leader. One day, he went on a trip with some others to go ziplining. However, his…
The Muscular Dystrophy Association (MDA) recently held its MDA Clinical & Scientific Conference in March 2023. During the conference, stakeholders in the community discussed research trends and clinical practices associated…
In November 2022, the UK's Medicines and Healthcare Products Regulatory Agency (MHRA) approved Upstaza (eladocagene exuparvovec) for the treatment of aromatic L-amino acid decarboxylase (AADC) deficiency. The product, which…
In 1956, Dr. C. Miller Fisher first described Miller Fisher syndrome after seeing three patients who presented with absent tendon reflexes, ataxia (impaired coordination), and eye muscle weakness. Eventually,…
In the United States, the FDA grants Orphan Drug designation to drugs or biologics intended to diagnose, prevent, or treat rare conditions (those affecting fewer than 200,000 people in…
The 1980 World Series was a grand event for the Philadelphia Phillies. It was the last inning, and the Phillies were up by 3. With two players out and…
The Muscular Dystrophy Association (MDA) held its MDA Clinical & Scientific Conference from March 19-22, 2023 to share research, cutting-edge medical advancements, and clinical care practices within the muscular…
Albinism has not only been historically stigmatized, but has fueled superstition, misbeliefs, and discrimination in areas across the globe. For example, in certain areas, children with albinism may be…
A mother knows best. In Kaitlyn Fryar's case, her intuition about her son Hudson led her to pursue help from numerous doctors. According to CBS Pittsburgh, Hudson seemed to…
Ezri Care Artificial Tears, as well as nine other ophthalmologic brands that create artificial tears or eyedrops, have been linked to dangerous Pseudomonas aeruginosa infections in people across sixteen different…
An estimated 6,000-10,000 people within the United States are living with Rett syndrome. Prior to this month, these individuals have not had access to targeted treatment options. But this…
In many rare conditions, early diagnosis and treatment typically correspond with better outcomes. Prior to March 2023, LIVMARLI (maralixibat) was approved for the treatment of cholestatic pruritus related to Alagille…
On March 9, 2023, Issues Concerning Athletes held its 13th Annual Celebrity Bartender Night at Wasted Grain in Scottsdale, AZ. Erica Brooks, the Founder of Issues Concerning Athletes, spearheaded the…
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…
In many cases, babesiosis - a rare parasitic illness - is not fatal. Some individuals who are infected with babesiosis are even asymptomatic, meaning they don't show any symptoms.…
While there are existing therapies for individuals living with homozygous familial hypercholesterolemia (HoFH), a rare form of high LDL cholesterol, these therapies often fail to control cholesterol levels for…
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