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…
Continue ReadingRare Community Profiles: Study Investigator Dr. Weyand Discusses the Trial Data that Led to ALTUVIIIO Approval for Hemophilia A
On April 23, 2023, people around the globe will celebrate Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day. April 23 marks the 17th anniversary of when scientists shared that they had…
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…
Continue ReadingRare Community Profiles: How Stephanie’s Desmoid Tumor Journey Inspired Her Fight Against Medical Gaslighting
When Al and Terry Rezsel were married, they took their vows seriously: in sickness and in health. So when Terry was diagnosed with breast cancer in 2010, after 10 years…
Continue ReadingMan Bikes 3500 Miles to Raise Breast Cancer Awareness and Funds
When Alexander Barron (9) was first born, doctors told his parents that he would likely never walk. In fact, said doctors, Alexander would probably not be very independent at all…
Continue ReadingStudents Cheer on Peer with Chromosome 2q24 Microdeletion Syndrome as He Heads to a Special Olympics Competition
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…
Continue ReadingRare Community Profiles: How Dixie Commits to Supporting her Son and the MSMDS Community
The International Association of Fire Fighters (IAFF) shared in March 2023 that firefighters in Ontario would now have presumptive pancreatic cancer and thyroid cancer coverage. Presumptive coverage means that…
Continue ReadingICYMI: Pancreatic and Thyroid Cancer Coverage Now Provided for Ontario Firefighters
Have you ever heard of the Orphan Drug Act? This Act helped stimulate and advance the development of, and research into, therapeutics for individuals living with rare or underserved conditions. In…
Continue ReadingFDA Grants Orphan Drug Designation to OM-301 for Multiple Myeloma
For as long as he can remember, Geoff Rhyne has loved food - especially when he gets to cook it. After all, it was this passion and creativity that led…
Continue ReadingChef Holds “Southern Roots: A BBQ Reunion” to Raise Funds and Awareness for Kleefstra Syndrome
Revolo Biotherapeutics was founded with one specific goal in mind: to benefit people living with autoimmune and allergic diseases by creating novel, life-changing therapeutics that induce long-term remission. They…
Continue ReadingPhase 2a Study on ‘1104 in Allergic Disease Now Complete
Porphyria refers to a group of rare disorders that cause issues with the production of heme, which is part of what makes up hemoglobin (a protein in your red blood…
Continue ReadingThese Rare Diseases Cause Pain After Sun Exposure. Dersimelagon Could Help.
Historically, mesothelioma has been difficult to treat. Although treatment options exist, the cancer tends to respond poorly which results in a higher mortality rate. Improving patient care and outcomes (such…
Continue ReadingHow Preoperative Immunotherapy Can Change the MPM Treatment Landscape and Improve Outcomes
Let’s start with a little vocabulary lesson. Today’s word? Biomarker. A biological marker, or biomarker, refers to some sort of measurable indicator of disease. For example, blood pressure, cellular gene…
Continue ReadingA Biomarker for Niemann-Pick Disease Type C Could Improve Congenital Disorders of Glycosylation Diagnosis
The first few years of Saylor Baysden’s life involved a good deal of medical confusion. Her family pursued testing, leading to two diagnoses in 2020-21: autism and epilepsy. But her…
Continue ReadingNC Family Raises SYNGAP1 Awareness After Daughter’s Diagnosis
Children all across the globe enrolled in a study to evaluate Upstaza, a gene therapy medication, for the treatment of aromatic L-amino acid decarboxylase (AADC) deficiency. As part of their…
Continue ReadingIsraeli Surgeons Administer Upstaza to Boy with AADC Deficiency
Medical research is crucial in better understanding diseases and discovering novel treatment options. Unfortunately, there is often one large barrier to research: funding. This is especially true within the rare…
Continue ReadingResearchers Work to Develop Novel Gene Therapies for Alport Syndrome
In late February/early March 2023, Corby Davidson had some news to share. Normally, as a longtime host on The Ticket—a sports radio station—Davidson’s discussions were rife with the latest…
Continue ReadingICYMI: “The Ticket” Co-Host Shares Acoustic Neuroma Diagnosis
When asked about what information they wished they were given during their medical journeys, survivors of thyroid cancer reported a desire to have had more information on treatment. An article…
Continue ReadingSurvivors of Thyroid Cancer Say They Weren’t Well-Versed on Treatment
Over the years, scientists have learned that Plasmodium falciparum (P. falciparum) is tricky. This parasite, which causes the deadliest type of malaria in humans (falciparum malaria), is transmitted through the…
Continue ReadingMapping the Immune Response to P. Falciparum Explains How Malaria Evades Treatment
Reanna and Malaky always knew they wanted to start a family together. They tried for a while without success—so they were thrilled when they learned that Reanna was pregnant with…
Continue ReadingNearly £20K Raised for Family Whose Daughter Was Born with a Mitochondrial Disease
People living with bronchiectasis, a chronic condition characterized by damaged airways, experience progressive lung damage and inflammation. This can lead to a multitude of consequences, including a reduction in…
Continue ReadingEnrollment Complete for Phase 3 Study Evaluating Brensocatib for Non-CF Bronchiectasis
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…
Continue ReadingRare Community Profiles: Their Daughter’s Rare Disease Empowered the Traller Family to Advocate for ASPS Awareness and Research
STATHMIN-2 (STMN2) is a protein that has been proven to play a role in axonal development, repair, and stability. This protein is highly expressed in human motor neurons; research…
Continue ReadingFirst Patient Dosed in Phase 1 Study to Evaluate QRL-201 for ALS
Currently, the standards-of-care for narcolepsy include lifestyle changes involving diet and exercise, behavioral therapy, nap therapy, and certain medications designed to combat excessive daytime sleepiness. However, a majority of…
Continue ReadingPitolisant Reduced Excessive Daytime Sleepiness in Children with Narcolepsy
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