Bionews

Bionews is a digital health solutions company that empowers rare disease communities with trusted information & news, fostering a space where hope thrives.

06/17/2026

How does blood cancer get treated?: https://bit.ly/4of5zKG

Blood cancer treatments are evolving fast. New options for myeloma, leukemia, and lymphoma—like CAR-T therapy, targeted treatments, and stem cell transplants—offer hope and better outcomes for patients. Learn what’s available now on our website.

06/16/2026

Read her story: https://bit.ly/4vMU7bY

📝Living with cystic fibrosis often means making tough medical decisions, even when they’re painful. In her latest column, Lara Govendo shares what it was like to have her port-a-cath removed after nearly 10 years — a device that had become part of her body and her lifeline for IV antibiotics. The removal was necessary, but the process was intense, emotional, and far from simple.

Her story sheds light on the realities many in the CF community face: navigating infections, scar tissue, painful procedures, and the uncertainty of what comes next for venous access.

A powerful reminder of the strength it takes to manage CF every single day. 💜

06/15/2026

See what matters: https://bit.ly/4v2TGu5

🔬New trial data shows obexelimab may significantly lower IgG4-RD disease activity and reduce the need for glucocorticoids.

In a Phase 3 study, obexelimab demonstrated a 56% reduction in the risk of IgG4-RD flare compared to placebo. Many patients also tapered off or discontinued glucocorticoids while staying on treatment.

💙 For people living with IgG4-RD, this could mean a potential new option that targets disease activity without relying long-term on steroids.

Read the full trial: https://bit.ly/4v2TGu5

06/09/2026

Ambulatory wheelchair users exist too - and seeing other people’s stories accepting their mobility aids have helped me with my own confidence. 🤍

Muscular Dystrophy News provides a safe space for people to share their experiences with MD and mobility aids - give them a follow to find out more 💙

Learn more about Muscular Dystrophy via https://bit.ly/4ga271O

DystrophyNewsToday

06/08/2026

Apply for the scholarship now — http://rareartist.org 🔗

Calling all rare artists 🎨✨ The Rare Artist program by the EveryLife Foundation for Rare Diseases is giving artists impacted by rare disease a platform to turn creativity into advocacy. From visual art and poetry to music, this program celebrates the powerful stories within the rare disease community. 💜

Selected artists can receive mentorship, advocacy coaching, national recognition, monetary prizes, and the opportunity to showcase their work during Rare Disease Week on Capitol Hill in Washington, D.C.
Your story matters. Your art matters. Your voice deserves to be seen and heard.

Tag a rare artist below or share this with someone who should apply. 🎭🖌️🎶

06/04/2026

Click here: https://bit.ly/3PHiV5J to learn how an MRI study shows how FA disrupts communication for brain regions.

In case you were wondering what an MRI machine sounds like… how accurate is this? 😂

06/03/2026

Happy Pride Month! 🌈

At SMA News Today, we celebrate the diversity that makes our community strong and recognize that people living with SMA hold many identities, experiences, and stories.

The fight for LGBTQ+ rights and disability rights has long been connected through shared advocacy for dignity, accessibility, inclusion, and equal opportunity. This month, we honor the LGBTQ+ members of the SMA community and the advocates who continue working toward a world where everyone can live authentically and belong.

Your stories, voices, and experiences matter, and they help create a more inclusive future for all.

Happy Pride! 💙🏳️‍🌈

06/02/2026

Do you have a question for Reka?

We’re inviting our community to take part in a special Ask Me Anything and we want to hear from you.

Drop your questions in the comments, and Reka will be answering them in the Parkinson’s News Today forums through June 5.

This is a great opportunity to ask about real-life experiences, challenges, and navigating Parkinson’s, or anything else on your mind.

Join the conversation and make your voice heard here: https://bit.ly/4wPX0da

06/01/2026

📣 The 2026 MDA Engage Symposium series is expanding to FOUR cities across the U.S., bringing together individuals and families living with neuromuscular disease, caregivers, clinicians, researchers, and advocates for free, in person events focused on education, connection, and empowerment. 💙💛

From breakthrough research updates and clinical trial insights to caregiver resources and community networking, these events are designed to help accelerate progress and strengthen support across the neuromuscular community.

📍 Hershey, PA
📍 Chicago, IL
📍 Dallas, TX
📍 Stanford, CA

🔗 Learn more and register: https://www.mda.org/press-releases/mda-expands-2026-engage-symposium-series

Thank you to our sponsors!

Empowerment Sponsors: Amgen, BridgeBio, Novartis

Champion Sponsors: ArgenX, Biogen, Catalyst Pharmaceuticals, Inc., Dyne Therapeutics, Johnson & Johnson, Sarepta Therapeutics, Scholar Rock, Upsher-Smith

Media Partners: Bionews, ALS News Today, Myasthenia Gravis News, Muscular Dystrophy News, SMA News Today

05/29/2026

https://bit.ly/4dy4YQL Explore conversations across our rare disease communities. 💙

Finding people who get it can feel intimidating.

Rare disease communities often start with questions about symptoms or treatments, but some of the most meaningful conversations happen around everyday life, grief, family, work, hobbies, caregiving, and the moments in between.

Whether you share your experience, ask a question, or simply read along, your perspective could help someone else feel understood.

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