Bionews, Inc.

April is #ParkinsonsAwarenessMonth, a crucial time dedicated to empowering individuals impacted by #ParkinsonsDisease through education, community engagement, and advocacy. This year, key initiatives include the introduction of PAM, an innovative digital guide from the Parkinson's Foundation, designed to share vital resources and support for those affected. In one of our latest articles by Jacob Harney, PhD on Parkinson’s News Today, he discusses the importance of raising awareness to improve diagnosis and care for the over 10 million people worldwide living with Parkinson's disease. Kathleen Blake, MD, MPH also emphasizes the need for increased recognition of the disease to enhance the quality of life for patients. By participating in events and utilizing educational resources such as webinars and videos, we can help build a supportive environment for those affected. Discover how you can engage and support this important cause—read the full article for insights and action steps to make a difference this April. >> https://lnkd.in/gQ_vckPM #ParksinsonsDisease #ParkinsonsAwarenessMonth #PatientAdvocacy #Bionews

In 2024, Bionews, Inc. engaged our Myasthenia Gravis (MG) community with an in-depth, 48-question survey. The survey aimed to unearth several areas of concerns ranging from delays in diagnosis and confusion surrounding awareness about treatment options. One recurring theme throughout the survey results was the reality that many MG patients are lacking the proper resources and awareness surrounding FDA-approved treatment options. Learn more about how we can all work together to address gaps in MG care and Bionews empowers the patient voice to lead the way. Read the full report! >> https://lnkd.in/gXwsQXWq #RareDisease #PatientAdvocacy #CaregiverAdvocacy #Bionews

Dr. Albert Freedman is one of the country’s leading voices in rare disease psychology. His dedication to the rare disease community is rooted in his personal experience raising his son Jack, who was diagnosed with spinal muscular atrophy (SMA). Since, Dr. Al has worked directly with rare disease patients and caregivers to help them through their journey. We collaborated with Dr. Al to highlight a very important topic in the rare disease patient community: feeling unheard or misunderstood. In this article, the doctor explores reasons many rare disease patients struggle with feelings of being misunderstood or unheard by friends, family members, healthcare professionals, and industry partners. Like with most things in life, the doctor suggests that listening is the key to understanding the unique challenges and emotions rare disease patients face on a daily basis. Uncover more insights in the full article on our website to learn more about how we can all become better advocates. >> https://lnkd.in/gwq6uRDd #RareDisease #MentalHealth #PatientAdvocacy #CaregiverAdvocacy #Bionews

As a proud partner of the World Orphan Drug Congress USA, we are excited to share that our very own Marcella Debidda, President Patient Insights & Clinical Solutions and Ethan Ash, Senior VP of Business Development, will be taking the stage later this month in Boston. Join us at the Boston Convention & Exhibition Center April 22-24 and catch their can’t-miss Fireside chat: Engaging the rare disease patient online. Plus, receive 50% off your registration when you book with code BIONEWS50. Get your ticket and save today: https://lnkd.in/gfmKuDFU Patient advocates and hospital practitioners, apply for your FREE pass here: https://lnkd.in/gPrFED2B #WorldOrphanUSA #Bionews #Parternships #Conferences #RareDisease

Did you miss our news about the Living Rare Study? If you haven’t heard, the Living Rare Study is the first-of-its-kind effort in the U.S. to track the real-world experiences of people living with rare diseases and their caregivers. Led by the National Organization for Rare Disorders (NORD), this multi-year study is gathering critical data to help improve access, research, and resources for the rare disease community. Learn more at livingrarestudy.org. #LivingRareStudy #RareDiseaseCommunity #RareDiseaseResearch #PatientData

We’re excited to share the second episode of our exclusive Get Tough on Multiple Sclerosis video series 💪 Doctor Susan Payrovi, MD, IFMCP, who both treats patients and lives with multiple sclerosis, is joined by doctor and MS specialist Mirla Avila to discuss pain, a common symptom that many MS patients deal with on a daily basis. Together, our hosts talk through how to deal with pain in MS, life hacks for patients and caregivers, and work to dispel some common myths about pain and MS. Watch the full episode >> https://lnkd.in/gUiKsr65 #MS #PatientPerspective #MSPhysician #DigitalHealth #MultipleSclerosis #podcast #healthcarepodcast

This past month, our very own Ethan Ash, SVP of Business Development, had the pleasure of interviewing Mirum Pharmaceuticals, Inc. CEO Chis Peetz at the Rare Disease Summit Informa Connect. The two discussed the importance of elevating the patient voice, their passion for the rare disease space, and macro trends in the rare disease industry. Watch below for some of our favorite moments or view the full video here >> https://lnkd.in/gZYjkBMm #Bionews #InformaConnect #Partnerships #RareDisease #Conference #DigitalHealth #Collaboration

Conference participation and attendance in the rare disease space is important 👏 Jennifer (Jenn) Powell, brand marketing manager at Bionews, Inc., highlights our enhanced efforts to engage with other organizations as we aim to take a more active role in both attending and participating in conferences across the nation in 2025. Rare disease patients and caregivers are given a unique opportunity to engage with key stakeholders and collaborate in an environment that would not otherwise exist. When we learn more from rare disease patients, we are able to share more with our readers across our 50+ rare disease websites. If you want to learn more about how you can benefit from a partnership with Bionews, reach out to us! https://lnkd.in/gj9x9zyC #Bionews #Collaboration #Partnership #RareDisease #Presentation #PatientVoice

Living with a rare disease presents a significant challenge, often involving delayed diagnoses, limited treatment options, and an ongoing necessity for self-advocacy. Many patients endure years of uncertainty, consulting multiple healthcare providers before finally receiving a diagnosis, only to find that effective treatments are often scarce or difficult to access. In early 2024, we surveyed our rare disease communities to listen to their unique perspectives from the diagnostic journey. Through a series of survey questions and engaging one-on-one interviews, we were able to identify some key areas of improvement. See below for the most common barriers that rose to the surface. ✅ 78% reported lack of rare disease knowledge as a significant barrier. ✅ 37% noted that limited specialist access was a common issue. ✅ 32% acknowledge long wait times for appointments as a pain point. ✅ 33% reported a lack of emotional support as an area for improvement. ✅ 27% said medication use was a barrier. Learn more about how Bionews, Inc. can start addressing these gaps in rare disease care by reading our full report! >> >https://lnkd.in/g23zRPGB #RareDisease #PatientAdvocacy #CaregiverAdvocacy #Bionews

The 2025 MDA Clinical & Scientific Conference in Dallas, Texas was one for the books! Bionews, Inc.’s editorial team played an active role in covering the event. Senior science writer Marisa Horak and science editor José Marques Lopes were on-site, delivering comprehensive editorial coverage to keep our neuromuscular communities informed. Our team published over 20 articles across eight of our unique rare disease sites. These articles highlight the latest research and developments in disease and drug therapies that matter most to our communities. Featuring in-depth interviews with pharmaceutical leaders, researchers, and advocates, our coverage aims to provide valuable insights and perspectives. Among the standout pieces from our reporting, we showcased the inspiring story of Donovan Decker, the recipient of the 2025 MDA Legacy Award for Community Impact in Research. Facing limb-girdle muscular dystrophy, Donavon made history by being the first MD patient to receive gene therapy in 1999, exemplifying resilience and progress in the field. Additionally, we featured an exclusive interview with Daniel Grant, Novartis’ Vice President and Global Program Head, discussing the groundbreaking impact of Zolgensma on infants born with SMA. Novartis, who sponsored our conference coverage on our SMA News Today site, has played a pivotal role in transforming treatment options for these patients. Check out some of the memorable moments captured at the conference, including our team with Donavon Decker, the interview session with Daniel Grant, and the Bionews team present at the event. We are excited to continue our involvement in conferences throughout the year as we aim to continue making an impact in the 50+ rare disease communities we engage with. #MDA #Bionews #MuscularDystrophyAssociation #Conference #Partnership #MuscularDystrophyNews