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 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: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference
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…
Continue ReadingRare Community Profiles: He’s Only “1 of 20,” But Jonathan Cappiello’s Impact Extends Much Further
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.…
Continue ReadingSTUDY: Fecal Transplant Ineffective in Treating Parkinson’s Disease Symptoms
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…
Continue ReadingSeventh Person is Cured of HIV Through Specialized Stem Cell Transplants
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…
Continue ReadingWhy Dr. Fiorentino Believes in a Promising Treatment Future for Dermatomyositis
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…
Continue ReadingCytokines Cause Flu-Like Bipolar Depression Symptoms
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…
Continue ReadingAMX0035 Earns Orphan Drug Status in Europe as a Wolfram Syndrome Treatment
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…
Continue ReadingA Bite on Her Scalp Caused This Young Girl’s Tick Paralysis
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…
Continue ReadingRNU4-2 Variants Cause Up to 0.4% of Neurodevelopmental Disorders
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…
Continue ReadingEnrollment Complete for Phase 3 Study Evaluating aPAP Treatment Molgramostim
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…
Continue ReadingStudy: Specialized Immune Responses Keep Some People from Contracting COVID-19
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: Volv’s Innovative Approach Harnesses the Power of AI for Rare Disease Detection
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…
Continue Reading12 People in Pune, India Diagnosed with Zika Virus Infection
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…
Continue ReadingSLEEP 2024: Presented Data Highlighted Possible Benefits of ALKS 2680 for Narcolepsy Type 1
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: Astellas Pharma’s Dr. Anthony Yanni Discusses the Success of the First-Ever Patient Advocacy Organization Action Week (PAOAW)
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…
Continue ReadingA New Blood Test Could Identify FTD, ALS, and PSP
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…
Continue ReadingLong-Term Safety and Efficacy Data Available on Vabysmo for Diabetic Macular Edema
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…
Continue ReadingOsilodrostat Improved Diabetes and High Blood Pressure in Cushing’s Disease
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…
Continue ReadingSLEEP 2024: Two Studies Explore Link Between Narcolepsy and Cardiovascular Disease Risk
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 Third Elephant on the Ramp to the Ark: How Carl’s Advocacy Affected His iMCD Journey
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…
Continue ReadingDNA Base and Prime Editing Could Correct Hemophilia A Gene Mutations
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: Superhero Liam Battles KAND with the Help of Shriners Children’s
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…
Continue ReadingPAH Drug Winrevair (Sotatercept) Receives Positive CHMP Opinion
Prednisone, oral steroids, intravenous hydrocortisone, and even blood transfusions are used to treat autoimmune hemolytic anemia (AIHA). AIHA comprises of warm AIHA, mixed AIHA, or cold agglutinin disease (CAD). Some…
Continue ReadingSTUDY: 33% of Adults with Severe Autoimmune Hemolytic Anemia Responded Well to Add-On IVIG
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 Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome
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