Bionews

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

12/02/2025

Ready to travel? https://bit.ly/4ojG5KK ✈️ ♿

Traveling with SMA takes extra care—but with the right planning, it can be safe and rewarding. Talk to your doctor, research accessible options, arrange assistance early, and pack smart.

Remember to pace yourself and enjoy the journey. Your adventure awaits! 💙

12/01/2025

New research highlights important clinical markers for kidney disease in AAV. https://bit.ly/4abylXC

High inflammation levels, a high number of blood-clotting-inducing platelets, blood in the urine, and lung involvement were all linked to a higher risk of pauci-immune glomerulonephritis — a common kidney complication in AAV.

Learn more about the research here: https://bit.ly/4abylXC

11/28/2025

"Constantly finding ways to work around my terminal illness"

11/27/2025

We are so thankful for our caregivers and the love, care, and support you give! 💛

https://bit.ly/47R5t5s to read coping strategies for caregivers.

11/26/2025

Dive deeper via: https://bit.ly/3LSWxEe

People with hemophilia carry a lot, but some things are worth leaving behind:

Extra factor? Yes.
Medical records? Absolutely.
Your child’s hand in yours? Always.
Weights or movement that make you feel strong? If it works for you, that’s a yes too.

What you don’t need to carry are other people’s fears, assumptions, or outdated ideas about what hemophilia looks like.

11/25/2025

Have you ever wondered what Parkinson’s psychosis looks like, or how to support someone experiencing it? https://bit.ly/3WSovSN

Our new guide breaks down the signs, challenges, and ways to navigate Parkinson’s-related psychosis with understanding and confidence. Whether you’re a patient, caregiver, or family member, this resource can help you approach the topic with clarity and compassion.

11/24/2025

For the DMD community: a promising update you’ll want to see. https://bit.ly/4rhEasJ

A long-term analysis of AGAMREE (vamorolone)—a steroid-alternative treatment for Duchenne muscular dystrophy—indicates that it preserves walking ability at a level comparable to standard corticosteroids, while significantly reducing risks of vertebral fractures, growth stunting, and eye problems.

While more data is still coming, this could mean a safer long-term path for treatment.

11/21/2025

Caring for someone with hereditary angioedema means more than managing symptoms: https://bit.ly/4i1qlKy

It means being their steady support through every challenge. From understanding triggers to advocating for treatment, caregivers make a world of difference.

Check out our latest guide to empower yourself and those you care for.

11/19/2025

🧡 Share with the community in the comments below ⬇️

11/18/2025

Explore work with MG: https://bit.ly/4i1qlKy

Sarah’s story digs into what it really means to rethink career paths when your energy has limits. It’s not about giving up ambition. It’s about choosing work that fits your body, your boundaries, and the life you want to build.

11/17/2025

MG and preterm birth: https://bit.ly/4835QZF

For World Prematurity Day, we’re spotlighting an important part of pregnancy with myasthenia gravis. Some studies show higher rates of preterm birth and preterm premature rupture of membranes in women with MG, especially when symptoms worsen during pregnancy. Sharing this helps raise awareness and support families navigating these risks with compassion and knowledge.

11/14/2025

CF-related diabetes: https://bit.ly/48kf0RJ

World Diabetes Day reminds us that diabetes looks different for everyone. For people with cystic fibrosis, CF-related diabetes adds another layer to an already demanding routine. Food choices, medications, glucose checks, and the mental load of it all can feel like a lot.
If CFRD is part of your life too, know that your daily effort matters.

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