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: 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…
Continue ReadingMom Advocates for More Research After Daughter’s NF1 Diagnosis
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…
Continue ReadingStepping Up for Rare Disease: NFL Players Support Uplifting Athletes for My Cause My Cleats Initiative
Courtesy of Avocados from Mexico: Giuliana Rancic hosts the Super Good Rally at the Avocados From Mexico Cure Bowl rallying for survivors and thrivers going through their cancer journeys while celebrating being 12 years cancer free.
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…
Continue ReadingFrom E! News to Empowerment: Giuliana Rancic Partners with Avocados from Mexico to Raise Breast Cancer Awareness
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…
Continue ReadingA New Mom’s Pelvic Pain Turned Out to Be Cervical Cancer
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…
Continue ReadingThis Brewer Raises Rare Disease Awareness and Funds Through Beer — And Now He Wants Others to Help
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…
Continue Reading“Biscochito” Children’s Book Raises Cerebral Cavernous Malformation (CCM) Awareness
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…
Continue ReadingUsing Fruit Flies, Researchers Find Potential Genetic Link to Alzheimer’s
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…
Continue ReadingTRIAL RESULTS: How Did Mirdametinib Perform for NF1-PN?
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%…
Continue ReadingPhase 3 Program on Cobitolimod for UC Discontinued After Inability to Meet Primary Endpoint
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,…
Continue ReadingMesquite Firefighter Dies from Creutzfeldt-Jakob Disease (CJD)
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.…
Continue ReadingICYMI: Positive Topline Data Available on Vimseltinib for TGCT
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.…
Continue ReadingRare Community Profiles: The Enemy Inside Me: Brandi’s Journey of Hope and Survivorship After Ewing Sarcoma
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…
Continue ReadingBacterial Meningitis Identified as Cause of Death for 21-Year-Old Northeastern Student
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.…
Continue ReadingRare Community Profiles: “A Ballsy Sense of Tumor:” How Justin’s Testicular Cancer Diagnosis Led Him to Advocacy Around Men’s Health
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.…
Continue ReadingRare Community Profiles: Every Day for MBC: What Laura Wants You to Know about Metastatic Breast Cancer
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…
Continue ReadingGoFundMe Launched to Support Saskatchewan Boy with Sanfilippo Syndrome
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,…
Continue ReadingResearch Suggests That Maternal and Infant Antibiotic Exposure Heightens EoE Risk
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…
Continue ReadingHer Ear Infection Turned Out to Be an Acoustic Neuroma
An estimated 75% of women will develop vulvovaginal candidiasis (a vaginal yeast infection) during their lifetime, with a significant number (approximately 140 million women worldwide) experiencing recurrent yeast infections.…
Continue ReadingExperimental Study Highlights Potential Benefit of Zinc for Treating Vulvovaginal Candidiasis
A Phase 1/2 clinical trial sought to evaluate the potential of vepdegestrant as a therapeutic option for heavily pretreated individuals with estrogen receptor-positive (ER+) and HER2 negative (HER2-) advanced…
Continue ReadingUpdated Phase 1/2 Data Highlights Vepdegestrant Benefits for ER+ HER2- Breast Cancer
When drugs enter into clinical studies, both patients and drug developers alike hope for success. These therapies could transform the treatment sphere, especially in disease states with limited or…
Continue ReadingAlofisel for Complex Perianal Fistulas (CPF) Falls Short in Phase 3 Trial
This year, the National Organization for Rare Disorders (NORD) held its annual Breakthrough Summit from October 16-17 in Washington, D.C. During the Breakthrough Summit, NORD celebrated its 40th anniversary and…
Continue ReadingAn Overview of My Time at the NORD October 2023 Breakthrough Summit
When it comes to caregiving for a family member, loved one, or other individual living with any type of health issue, there is an enormous financial, emotional, and mental burden…
Continue ReadingThe Impact and Challenges of Caring for People with Tardive Dyskinesia
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Sign Up For Our Patient Panel
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.
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.