PATIENT COMMUNITIES
Trusted News. Lived Insight.
50+ Rare Disease Communities
At Bionews, our communities are the heart of everything we do.
Across our 50+ rare disease communities, we’ve created trusted spaces where patients and caregivers connect, share lived experiences, and find credible, clinically relevant information. Our content is as rare as the conditions we cover, blending real patient perspectives, carefully sourced and cited resource pages, and industry leading journalism from veteran journalist and PhDs.
What sets our communities apart isn’t just their scale—it’s the authenticity, trust and clinical intent. Our audiences are actively seeking information, sharing lived experiences, and making informed decisions. They are in a clinical mindset and eager to engage with Industry.
What’s a clinical mindset?
“I visit SMA News Today when I’m managing life with SMA; I visit ESPN because I love the Texas Rangers.
I’m most likely to engage with treatment information when I’m in that clinical mindset. SMA is part of my life, but it doesn’t define me.”
Michael Morale
SMA Patient, Columnist, & Bionews Sr. Marketing Analytics Manager
In Memoriam, Driving Impact in the Bionews SMA News Community 2018-2025
Our Communities
AADC News
Angioedema News
aHUS News
ALS News Today
Alzheimer’s News Today
ANCA Vasculitis News
Angelman Syndrome News
Ankylosing Spondylitis News
Batten Disease News
Cold Agglutinin News
Cystic Fibrosis News Today
Charcot-Marie-Tooth News
COPD News Today
Cushing’s Disease News
Dravet Syndrome News
Ehlers-Danlos News
Epidermolysis Bullosa News
Friedreich’s Ataxia News
Fabry Disease News
FAP News Today
Fragile X News Today
Gaucher Disease News
Hemophilia News Today
Huntington’s Disease News
Hypoparathyroidism News
IgG4-RD News
Lambert-Eaton News
Liver Disease News
Lupus News Today
Muscular Dystrophy News Today
Multiple Sclerosis News Today
Myasthenia Gravis News
Launch a Community
Don’t see a community you’re interested in? Contact Us today to learn more about launching a new patient community.
Community Moderators
Our communities are built from the stories and connections of those living with rare diseases.
From the writers to the forum moderators, the unique patient perspective is always front and center. Below are just a few of the moderators that lend their expertise to our communities.
Brianna Albers
Jamie Askari
Halsey Blocher
Jen Cueva
Brad Dell
Christie DuBois
Matt Lafleur
Jenn Powell
Kiersten Riggs
Kevin Schaefer
Alyssa Silva
Juliet Taylor
Brianna Albers
Crip-cyborg storyteller
She lives and works in Toronto, Ontario, Canada. She loves being physically active, traveling, cooking, baking, reading, and spending time with friends and family. A lifelong learner, she is currently working on her MBA through the University of Fredericton’s Sandermoen School of Business.
Jamie Askari
Managing Director of Premier Health Advocates, LLC
Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with spinal muscular atrophy (SMA) type 1 through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.
Halsey Blocher
Column Manager at BioNews
She is a school psychologist living in Florida. Her family has a history of amyotrophic lateral sclerosis (ALS) spanning multiple generations. Her family has participated in several research studies and has found that they have a mutated gene that is believed to be the cause of ALS. Amanda also has the mutated gene and has been volunteering for ALS research for about 10 years. She brings her experiences to the ALS News Today Forums, connecting with patients and caregivers around the globe.
Jen Cueva
Columnist & Forum Moderator for PH News Today
Jen Cueva, a columnist and forum moderator for Pulmonary Hypertension News Today, was diagnosed with pulmonary hypertension (PH) in 2005. Previously a nurse, Jen’s life changed course after her diagnosis. Advocating for the PH community and connecting with others affected by the condition have always been essential to her. Her passion lies in instilling hope and reminding those in the PH community that they are not alone. Through her weekly column, she delves into the emotional rollercoaster of living with PH. Jen lives in sunny California with her husband and mini schnauzer. Their motto: Together we PHight stronger.
Brad Dell
Director of Community Content
Brad Dell has cystic fibrosis and a double-lung transplant. Technically deaf, he hears with the help of cochlear implants. Before Bionews, he worked as a copy editor and journalist for several culture and lifestyle magazines in Hawaii. He was also the executive editor for Honolulu’s Abstract Magazine. He serves as the Bionews director of community content, boosting patients’ and caregivers’ voices to cultivate change in the chronic conditions community. To do so, he recruits, trains, edits, and supports dozens of columnists.
Christie DuBois
Columns Lead at BioNews
When Dagmar was diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 59 in 2010, she tapped into her nearly 30 years of professional experience. She not only follows her own wellness and fitness advice but also inspires and teaches others to do the same. Dagmar is a patient columnist for ALS News Today, writing “Living Well with ALS.” In addition, she is one of the moderators for the ALS News Today Forum and writes a personal blog called “ALS and Wellness.” She lives in Arizona, enjoying finding humor in life’s situations, and spends her free time pursuing creative projects in fiber arts.
Matt Lafleur
Director, Business Development & Patient Advocacy at BioNews
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
Jenn Powell
Brand Marketing Manager at BioNews
Jenn Powell is the Bionews brand marketing manager. She lives in Southern California where she enjoys volunteering for animal rescue and spending time with her husband and golden retrievers. From her time at Bionews, Jenn has created content for and collaborated with multiple divisions of Bionews, including Bionews Insights and Bionews Clinical. Jenn is driven to elevate the needs of those in the rare disease communities. She has done so through her column, reading of news briefings, and hosting the recently launched MS News Podcast. Her patient perspective complements her passion and industry acumen for cultivating and engaging communities both within and outside of Bionews.
Kiersten Riggs
Social Growth Manager at BioNews
Mary Beth is a freelance writer specializing in personal narratives. Her work focuses on the outdoors and the transformative powers of nature. When her dad was diagnosed with Parkinson’s in 2013, her search to understand the disease materialized through language. She now writes to help others understand the disease and how to be a compassionate caregiver.
Kevin Schaefer
Forums Director at BioNews
Kevin graduated from North Carolina State University with a bachelor’s degree in English in 2016, and he is passionate about different forms of storytelling. He started at Bionews in 2017 as a columnist for SMA News Today, sharing his experiences as an adult with spinal muscular atrophy type 2. He eventually transitioned to a full-time role, helping build the company’s multimedia and forums divisions. As associate director of community content, he is responsible for supporting the director of community content in bridging the gap between our patient populations and our websites. He does this through building and maintaining patient and caregiver forums across Bionews’ disease sites. He oversees every step of the process, from hiring, training, and guiding forum moderators. His goal is to create engaging and supportive online communities for patients and caregivers to connect.
Alyssa Silva
Column Lead at SMA News Today
Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with spinal muscular atrophy (SMA) type 1 through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.
Juliet Taylor
Column Lead at ALS News Today
Jen Cueva, a columnist and forum moderator for Pulmonary Hypertension News Today, was diagnosed with pulmonary hypertension (PH) in 2005. Previously a nurse, Jen’s life changed course after her diagnosis. Advocating for the PH community and connecting with others affected by the condition have always been essential to her. Her passion lies in instilling hope and reminding those in the PH community that they are not alone. Through her weekly column, she delves into the emotional rollercoaster of living with PH. Jen lives in sunny California with her husband and mini schnauzer. Their motto: Together we PHight stronger.
William Ryan
Cystic Fibrosis News Today
William Ryan is a columnist for Cystic Fibrosis News. Hailing from New Jersey’s Garden State, William manages both cystic fibrosis (CF) and cystic fibrosis-related diabetes. He’s married to his wife, Gina, and they share their home with their canine companions, Otis and Ruby. As a former standup comedian, William hopes to bridge his humor and love of sports and pop culture in his column, “Understanding Nonsense.” He has a nonsense gene of CF, which is a rare mutation. William hopes that he can advocate for for all of those with CF, especially those with rare mutations
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