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.
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…
For over three decades, Neurocrine Biosciences, Inc. has been working to support individuals with neurological, neuroendocrine and neuropsychiatric disorders through the development of breakthrough treatment options. One of the company’s…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more. Jonathan…
Fecal microbiota transplants (FMTs) take healthy bacteria from stool provided healthy individuals, and transfer it to a donor with gut microbiome dysbiosis. Typically, fecal transplants are performed to treat C.…
Globally, an estimated 39.9 million people live with human immunodeficiency virus (HIV). HIV is an infection which, over time, damages the immune system. This condition can be spread through sexual…
In some cases, dermatomyositis can be difficult to treat. A variety of treatment options are available, from corticosteroids and immunosuppressants to antimalarials, colchicine, alendronate, and warfarin. But this rare condition…
Have you ever heard of cytokines? These signaling proteins play a role in inflammation in your body. Normally, cytokines help your immune system respond to foreign invaders. But when too many…
Rare disease drug development can be challenging. Countries globally developed programs to incentivize innovation and development in this space. One of these initiatives is the designation of orphan drugs, or…
Ruby Carr has always loved playing outside. But an enjoyable day in the summer sun turned into chaos after Ruby was unknowingly bitten by a tick. As the tick latched…
In unedited, early-access research published in Nature, a team of researchers explain that an estimated 60% of people with neurodevelopmental disorders remain undiagnosed, despite comprehensive genetic testing options. In many cases, this is…
Clinical-stage biopharmaceutical company Savara Inc. was founded on a desire to develop innovative therapies for people living with rare respiratory diseases. The company's work over the past few years centers…
The COVID-19 pandemic took our world by storm. COVID-19 affected hundreds of millions of people globally and was associated with tens of millions of deaths. Today, people are still dying…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Zika virus, a mosquito-born illness, is not harmful in many cases; for most people, Zika virus causes either no symptoms or a mild sickness. However, this viral illness is extremely…
The American Academy of Sleep Medicine and the Sleep Research Society held the 38th annual SLEEP meeting in early June 2024. The meeting allows stakeholders across the sleep sphere to…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
What do progressive supranuclear palsy (PSP), frontotemporal dementia (FTD), and amyotrophic lateral sclerosis (ALS) all have in common? People with these conditions often face long diagnostic delays due to challenges…
Since its development and approval, Vabysmo has been a game-changer in the ophthalmologic space. The injectable VEGF and Ang-2 inhibitor treats diabetic macular edema (DME), macular edema with retinal vein…
The ENDO Annual Meeting, held by the Endocrine Society, presents comprehensive information on the newest treatments, studies, and clinical guidelines in areas like obesity, endocrine cancer, and diabetes. During this…
The SLEEP 2024 Annual Meeting took place this year from June 1 to June 5 in Houston, TX. During the course of this premier sleep conference, stakeholders across the sleep…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Genetic disorders are caused by genetic mutations (changes) in your gene. Over the past decade especially, researchers increasingly explore genome editing options to fix or address genetic diseases at the…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Drug developers must undergo a stringent set of testing and regulatory steps in the journey towards drug approval. In the European Union (EU), the Committee for Medicinal Products for Human…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
