We help patients living with rare diseases connect with ongoing clinical trial opportunities, faster!

We Live Rare

More than 70% of the BioNews team consists of patients, many of whom are currently participating in — or have participated in — a clinical trial. This unique perspective brings deep insight into the process and challenges that both trial sponsors and patients experience during trial development and studies.

Mission

BioNews is on a mission to connect all people touched by rare diseases to clinical trials through eminent, actionable education and engagement.

We brought together more than 2 million people living with diseases, most of which don’t yet have a cure.

The clinical trial services we offer is our own way to move research forward, faster!

What Makes Us Rare

Through the stories we tell, we encourage and celebrate the joy, the hardship, and the extraordinary gift of being human. In doing so, we have built highly engaged, interactive rare disease communities.

Because we regard our patient communities as the experts who lead and guide our work, we have gained their confidence and trust.

Because we ARE our patient community, more than half of our company is made up of people living with rare diseases or people who care for them.

Because we have built an inclusive culture of respect, collaboration, and empathy that brings together the entire patient circle to include scientists, writers, and clinical trial experts, we can provide real-time, relevant, and actionable information that will help you design and conduct human-centered clinical trials.

I’ve always wanted to write about my experience with SMA so that I could bring more attention to it and provide stories that people with spinal muscular atrophy (and people without it) could relate to. BioNews has given me a platform that allows me to do that and so much more.

Halsey Blocher
Patient – SMA

I share Fabry Disease News articles, including my own articles, with the National Fabry Disease Foundation’s Facebook community of more than 3,700 followers and in other forums.

As a columnist, I share my own experiences with Fabry disease and information about the National Fabry Disease Foundation (NFDF) with others. Fabry Disease News has become an important component of the multifaceted NFDF communication and education program.

Jerry Walter
Patient – Fabry Disease

It has provided me a way to educate others about the disease and also let them know they are not alone in what they are experiencing.

I am given free rein to write from my heart, and I have the opportunity to choose the topics I want to write about.

Jean Mellano
Patient – Parkinson’s

BioNews has allowed me to talk about sensitive topics on a platform where I feel like my voice is heard. Through my columns, I am able to bring both education and awareness to others within the disease community as well as those that are part of my support system.

BioNews has allowed me to feel a sense of belonging with those in the rare disease communities. I think that there is power in numbers. The more that are involved, the more education happens.

Brittany Foster
Patient – Pulmonary Hypertension

BioNews has encouraged my authentic, honest voice and given me a platform to honestly share what it’s like living with porphyria day to day.

Claire Richmond
Patient – Acute Porphyria

Supporting 50+ Online
Patient Communities, including ...