Articles and publications

Our latest insights and news on rare disease, and how we’re helping drive change through clinical research.

November 2020

Video: How do people living with rare diseases feel about clinical trials in 2020?

Faced with the pandemic, the patient community overwhelmingly recognizes the benefits of a decentralized approach to clinical trials

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Blog

October 2020

What people living with myasthenia gravis want you to know

Insights into myasthenia gravis in the words of the people who know it best. Want to understand the everyday reality of living with a rare disease? Raremark users regularly share their experiences with us. It gives them a chance to learn from others, and also provides a chance for them to be heard by the people working on new treatments. Here’s what people living with myasthenia gravis (MG) want you and the world to know about their condition.

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Blog

October 2020

How best to keep people with rare diseases engaged in clinical trials

Lessons from our day-to-day interactions with interested patients.

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White Paper

October 2020

Free Guide: Digital advertising policies for patient reach (Edition 2)

The rules around advertising online to reach patient populations are complex and changing all the time. This updated guide will help researchers understand key ad policies across major digital channels.

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Media Article

August 2020

Treasuring your exceptions in rare disease research

We share top 10 tips on engaging rare disease patients in clinical trials with the journal Clinical Researcher

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Media Article

August 2020

Machine learning in rare disease: is the future here?

On the long road to realizing the full potential of artificial intelligence in health, exciting innovations are happening every day, as Alex Garner, our COO, writes in Pharma Live

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Media Article

July 2020

Unique challenges and opportunities in orphan diseases

The Orphan Drug Act was a pivotal moment for healthcare. Almost 40 years on, real-world evidence represents the next frontier. Jeremy Edwards, our CEO, outlines the challenges and opportunities in the orphan space

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Media Article

July 2020

Voices from the front line in rare disease

Online patient communities are helping break down traditional barriers in medical research. The benefits will outlast the current pandemic, as our founder Julie Walters writes in Pharmaphorum

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Blog

June 2020

What matters in rare disease during a pandemic?

Social media allows rare disease patients and carers to make important social connections, share experiences and stay up to date. We look back at our social media engagement and community responses from the past few months to gain insight on what really matters to our patient communities during a pandemic.

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Get in touch

Interested in hearing more? Feel free to reach out to us, and we’ll make sure to get back to you as soon as possible.