Bionews Insights
Get exclusive patient & industry insights and diverse perspectives to navigate the complexities of rare disease marketing.
Bionews Insights: Living Rare in Our Own Words
Living with a rare disease presents a journey fraught with difficulty, characterized by delays in diagnosis, limited treatment options, and the necessity for self-advocacy. Marcella Debidda, alongside Ryan Golley, Brad Dell, Kerry L. Wong, and Brandi Lewis, teamed up with the objective of gaining critical insights from our rare communities to further amplify and highlight the challenges and perspectives to influence meaningful change.
Bionews Patient Advocate Feature: Dagmar Munn of ALS News Today
In 2010, Dagmar Munn received an ALS diagnosis at age 59, a life-changing moment for her and her husband only two years after retiring in Tucson, Arizona. Since, Dagmar has maintained a positive outlook and an unwillingness to simply give up.
The Treatment Journey & Daily Living with Myasthenia Gravis: Amplifying the Patient Voice to Drive Improvements
In 2024, Bionews’ 48-question survey of 446 Myasthenia Gravis patients uncovered persistent gaps in diagnosis, treatment efficacy, and gender imbalances—underscoring the vital importance of patient voices in shaping advances in rare disease care.
Bionews Advocate Feature: Richard Poulin III of AADC News
Richard Poulin III’s daughter was diagnosed with AADC at a young age, but it was only through his determination that she received her diagnosis and eventual treatment. Read the full article to learn more about Richard’s story and how being a caregiver for his daughter has changed his life.
Bionews Advocate Feature: Jamie Askari of Parkinson’s News Today
Bionews’ caregiver advocates play a pivotal role in keeping our communities engaged with unique insights and content that speaks directly to their lived experiences. Jamie Askari is a Parkinson’s caregiver advocate on Parkinson’s News Today.
Bionews Columnist Feature: Halsey Blocher of SMA News Today
At Bionews, our columnists’ content and insights play a key role in keeping our 50+ rare disease communities engaged. We caught up with Halsey Blocher, our columns manager and contributing columnist on SMA News Today.
Rare Disease Content That Captivated the Community in 2024
Discover the top articles that resonated most with our communities and learn how patient voices shaped impactful storytelling.
A Collaborative Approach to Better Health
Read our key takeaways from the NIH-funded deliberative event on prenantal gene editing, and how the patient voice is invaluable in these conversations.
Patient power: A Q&A about Bionews’ Patient Advisory Board
Discover how Bionews is putting patients first. Read our Q&A with Brad Dell, Director of Community Content.
Leveraging rare patient insights for deeper engagement
In this Q&A, Marcella Debidda, President of Bionews Clinical and Insights, discusses the importance of patient-driven data in the rare disease community. Learn how Bionews leverages patient insights to foster deeper engagement, inform healthcare strategies, and drive meaningful change.
Survey snapshot: Daily living challenges for people with rare diseases
Our 2024 Rare Disease Survey sheds light on the significant daily challenges faced by individuals with rare diseases. Discover key insights into physical limitations, emotional well-being, pain, unpredictable symptoms, and gender differences.
The patient experience: 2024 Bionews Rare Patient Survey
Key takeaways: Living with rare disease
Uncover the realities of living with a rare disease. This in-depth 6-page PDF report, based on a nationwide survey of over 5,000 patients, provides detailed insights into diagnostic and treatment journeys, daily life challenges, and unmet needs.