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.
Last year, the FDA placed a clinical hold on an Investigational New Drug (IND) application for deucrictibant for the on-demand and prophylactic treatment of individuals living with hereditary angioedema…
In January 2023, the U.S. FDA approved Jaypirca (pirtobrutinib) for the treatment of adults with relapsed or refractory mantle cell lymphoma who had previously undergone two lines of systemic…
An estimated 75-80% of women will experience a yeast infection (also known as vulvovaginal candidiasis) in their lifetime. Sometimes, these uncomfortable infections seem to manifest after sex. So is it…
Also known as cholangiocarcinoma, biliary tract cancer can be incredibly aggressive. Further, this cancer is often diagnosed in later stages, making it more difficult to treat. The 5-year survival rate currently…
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare acquired hematopoietic stem cell disorder in which blood cells break apart prematurely. In an effort to bring more effective and targeted treatments…
During the NFL’s My Cause My Cleats initiative, passion and purpose collide on the field. This initiative embodies the profound bond between athletes and the causes that matter to…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
In the world of professional sports, where grit, resilience, and determination reign supreme, an unexpected intersection emerges: the realm of rare disease. While rare diseases and sports are often perceived…
One in every eight women will be diagnosed with breast cancer within their lifetime. Yet despite the prevalence, there are still many myths about this diagnosis. For example, some people…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Six years ago, Jonathan Kowalske's son Mac entered the world - and the family suddenly found themselves thrust into the rare disease community. Soon after birth, Kowalske and his…
Understanding rare, chronic, or uncommon conditions can be difficult. This is especially true when there is a general lack of education and awareness. Dr. Aditi Kantipuly decided to make…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Over their lifetime, people with neurofibromatosis type 1 (NF1), a rare genetic disorder, have a 30-50% chance of developing plexiform neurofibromas. These tumors grow on peripheral nerve sheaths throughout…
The risk of developing an inflammatory bowel disease (IBD) such as Crohn's disease or ulcerative colitis (UC) has been slowly but steadily increasing over time, with an estimated 0.8%…
Unfortunately, Jody McPherson, 47, a veteran firefighter with the Mesquite Fire Department, passed away after his battle with Creutzfeldt-Jakob disease (CJD). As reported by Selena Hernandez of CBS News Texas,…
Surgical resection remains the most common treatment approach for people living with tenosynovial giant cell tumors (TGCT). Unfortunately, surgery is not always an appropriate treatment option for all people.…
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.…
Bacterial meningitis is a serious bacterial infection affecting the meninges (the membranes around the spinal cord and brain). The membranes then swell and press on the spinal cord and…
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.…
Clinical studies are critical tools in identifying and developing therapeutics for a wide variety of conditions. This research is especially important in the rare disease and chronic illness spaces,…
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.…
Four-year-old Emmett Doucette is currently fascinated by firemen, dinosaurs (he has a favorite T-rex toy!), and toy race cars. He’s known to wear a fun fireman outfit and he loves…
Over the last three decades, researchers and doctors have noticed a concerning trend: increasing cases of eosinophilic esophagitis (EoE), a chronic digestive system disorder, in infants and children. In particular,…
For months, 47-year-old Jane Lightfoot struggled with what she thought was a nasty ear infection. The spot behind her right ear ached; she was dizzy, couldn’t hear well, and the…
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.
