Bionews

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

11/03/2025

November is National Family Caregivers Month 💙
A huge thank-you to all the caregivers who give their hearts every single day.
Follow Myasthenia Gravis News to learn more about MG, and big thanks to Glenn Cutler for this amazing video! 🙌

10/31/2025

https://bit.ly/3WPqJSC to read all about symptoms! 💙

🎃 Happy Halloween — Friedreich’s Ataxia edition! 👻🧠

Want to learn more about the symptoms of FA?

10/30/2025

Learn more about hemophilia via https://bit.ly/3IZzcj9

Hemophilia advocate L.A. Auguayo shares random factors he learned from Hemophilia News Today.

Stay up to date on new treatments, research, and real stories in the community — follow before I call you next 💀💉

🎃⬇️ Share with the community in the comments below 🎃⬇️
10/29/2025

🎃⬇️ Share with the community in the comments below 🎃⬇️

10/28/2025

Our very own Jen Cueva stepped into the world of Matter of Time: https://www.matteroftimefilm.com/

This powerful new documentary from the EB Research Partnership is about the fight to cure Epidermolysis Bullosa and the unstoppable rare disease community.

From Eddie Vedder’s heartfelt concert to families, patients, and scientists facing challenges with grit and hope, this film is a rallying cry for what’s possible.

Jen left inspired by the message: when we unite, breakthroughs aren’t just a dream—they’re only a matter of time. 💙

10/27/2025

Accessibility first this Halloween—join the fun! https://bit.ly/3WSn1Yt

Magic Wheelchair UNH builds one-of-a-kind costumes that put wheelchair users center stage — from pirate ships to dragons and everything in between 🎃 Each design is a celebration of imagination, identity, and inclusion.

These epic creations don’t just transform wheelchairs — they bring people together. Builders, families, and fans all pitch in to make sure everyone gets their spotlight moment and a chance to feel seen, celebrated, and unstoppable 💪

Watch to Christine Getman, Executive Director of Magic Wheelchair and a person in a wheelchair herself, share how their project transforms wheelchairs into custom costumes. It’s a beautiful way to celebrate creativity, identity, and community for so many people in wheelchairs.

It’s more than cosplay. It’s community magic 💙 Are you planning on dressing up for Halloween? We’d love to hear about it!

10/24/2025

Watch a video on MG travel hacks — https://bit.ly/49fBdSI

Myasthenia Gravis advocate shares his best tips for hitting the road while managing MG 🚗✨ From planning rest breaks to packing medications and knowing your limits, he reminds others that with preparation and self-awareness, travel is absolutely possible.

Living with an invisible illness means fighting battles no one else sees: https://bit.ly/3L62SvqYour journey matters, an...
10/22/2025

Living with an invisible illness means fighting battles no one else sees: https://bit.ly/3L62Svq

Your journey matters, and your courage inspires us all.

Not all pain shows on the outside. Be patient, be kind, and remember—it’s okay not to be okay sometimes. Invisible illnesses test our resilience daily. Together, we can create a world where support and empathy are always within reach.

You’re seen. You’re heard. Your experience is valid. Let’s normalize conversations about invisible illness and break the silence.

Every day is a step forward. Celebrate the small victories—your strength makes all the difference.
The journey isn’t always visible, but the courage it takes shines bright. Share your story and inspire others.

Major news for the SMA community: https://bit.ly/4owYzrlA recent study shows clomipramine, an antidepressant, can increa...
10/22/2025

Major news for the SMA community: https://bit.ly/4owYzrl

A recent study shows clomipramine, an antidepressant, can increase SMN protein levels, crucial for motor neurons affected by SMA. By blocking the SMPD1 enzyme, clomipramine boosts SMN production and reduces nerve cell damage in lab-grown motor neurons from SMA patients.

This finding offers a promising new treatment approach using an existing drug with a good safety profile. More research and clinical trials are needed, but this discovery could pave the way for improved SMA therapies in the future.

10/21/2025

Emily, MS advocate, shares her story: "Before my MS diagnosis, I was a force of nature.
Travel nurse, nonstop life, flying from my beach home on a tiny, remote
Caribbean island to tiny, remote communities in Northern Ontario—always
running full speed. Oh, and yes, parenting 3 growing kids, too.
Then came the symptoms I couldn’t outwork, the tests I couldn’t ignore, and
the diagnosis that changed everything. My extra-spicy version of MS forced
me to slow down, but it also forced me to find what really carries us through:
community.
That’s why I’m so grateful for spaces like and
—where stories are shared, awareness is raised, and people
living with MS don’t have to explain themselves over and over.
None of us get through this alone. 💛
Don’t forget to follow to keep up with this extra spicy
journey.
Follow for real stories and solidarity—because community is
treatment, too."

Big strides are being made in SMA care! https://bit.ly/475Y00R 🔬🧬From genetic discoveries to newborn screening and new t...
10/20/2025

Big strides are being made in SMA care! https://bit.ly/475Y00R 🔬🧬

From genetic discoveries to newborn screening and new treatments, science is offering hope to people of all ages. Next-gen therapies and digital health tech are helping personalize care and improve quality of life. The future looks brighter for everyone in the SMA community. 💙

10/17/2025

Learn more about ALS via https://bit.ly/3KNb5Vm

ALS advocate Amanda shares the reality of living with a rare disease. What’s one thing you have to do while living with a rare disease that you don’t look forward to?

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