Bionews

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

12/29/2025

Take a closer look at scoliosis in SMA: https://bit.ly/4iPDEhP

Scoliosis is a common part of life with SMA and can affect comfort, movement, and even breathing over time.

For some, monitoring or bracing may help support the trunk and slow curve progression; for others, surgery might be discussed to stabilize the spine and protect lung function, each with real trade‑offs to consider.

If scoliosis is on your radar right now, you are not alone in weighing options, asking hard questions, and pushing for care that fits your life and goals.

12/26/2025

How do you describe FA to someone new you meet?

12/25/2025

https://bit.ly/4j859mZ to hear more about what the holiday means when living with a Rare Disease.

Wishing our Bionews community a happy and healthy holiday season. 🎄✨

Thank you for being part of our community — we’re grateful for you today and always.

12/24/2025

With so many resources out there, it can be hard to know where to turn and who to trust.

When you live with a rare disease, information isn’t just “helpful”.
It’s part of how you stay safe, confident, and prepared.
And that’s why finding reliable sources matters.

has become a place I return to again and again.
Their updates are accurate, easy to understand, and grounded in both science and lived experience… a combination that helps me advocate for myself and navigate my CF care with more clarity.

12/23/2025

Learn More: https://bit.ly/49llj97

For some of us, becoming a patient advocate was never optional — it was the only way to survive a system that didn’t see us, believe us, or protect us.

Advocacy can light a fire, but it also takes a physical toll — every denial, appeal, and “fight to be believed” costs energy that our bodies don’t always have to spare.

12/22/2025

Learn more about MS here: https://bit.ly/44EsAhz

Sometimes MS feels invisible… until you meet people who actually get it.
That’s why I’m shouting out MS News Today — a space built for real stories, real community, and people who understand what this life feels like.

If you live with MS, love someone who does, or just want to understand it better, give them a follow.
Community matters. Awareness matters. Being seen matters.

12/19/2025

https://bit.ly/3L6VvEq

Living with MG doesn’t just shape the person diagnosed. It also quietly shapes the emotional lives of partners, friends, and family.

Sarah explores the guilt healthy loved ones may carry, the fear of saying or doing the wrong thing, and the complicated space between empathy and helplessness. It’s a piece that speaks to both patients and caregivers, without blame or pity, and reminds us that illness creates shared realities, not opposing roles.

12/18/2025

Chronic Illness friends understand...

12/17/2025

Thank you .blog for this post. " asked me for a few holiday gift ideas for people with SMA… and I immediately realized I couldn’t just pick a few, so here we are: a whole guide 🫶✨

There are honestly so many little tools and products that have changed my life and made day-to-day things feel a bit more accessible.

If you have SMA, I hope this sparks some ideas for your holiday wish list. And if you’re shopping for someone with SMA, I hope this makes the process way less stressful.

For more posts like this and a whole feed of SMA-focused content, follow !"

What would you add to this holiday gift guide? 🎁❄️

12/16/2025

How do you explain MS fatigue to friends, family or coworkers? https://bit.ly/44C1Luk

This column shares how the “spoon theory” can help you communicate: each day may feel like you start with a handful of spoons (energy), and every activity uses some, so you must choose how you spend them.

12/15/2025

How people with hemophilia can navigate everyday spaces: https://bit.ly/49bEHVX

This accessible parking space is clearly marked — but blocked by an electric pole downguy. Situations like this are common reminders that many environments are still not fully accessible.

For people living with hemophilia, navigating these gaps often requires planning, awareness, and adaptation. From parking to sidewalks and stairs to public transportation, moving through spaces that weren’t designed with mobility issues in mind is part of daily life.

12/12/2025

Adapting to keep some independence with ALS is key.

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