Raremark Voices #1:
Living with cystic fibrosis

Ep#1: Living with cystic fibrosis

Patient centricity is no longer a buzz word. The patient voice is firmly at the center of the drug development pathway, from compound discovery to designing clinical trials and well into the post-approval period.

In our new series: Raremark Voices, we invite extraordinary people living with rare diseases to talk about their stories, experiences, and expectations for the future.

In this first episode, we welcome two members of the cystic fibrosis community, Oli and Nancy, to talk with us about what it's like living with cystic fibrosis, their experiences with current treatments, and their views and expectations for new developments in the future.

In this month's Podcast

Oli Rayner

Oli Rayner, CF patient

Oli was born in Birmingham, UK in 1975 and diagnosed with cystic fibrosis at the age of 3. Oli has worked with CF Trust, CF Foundation, CF Europe, EURORDIS, EMA and Cochrane; and has been a named author on 6 CF research papers published in peer-reviewed journals.

Having been on the waiting list for just over 2 years, Oli received a double lung transplant in 2017 which has transformed his health and outlook. He is now a regular runner, a keen traveller as well as being an active member of the CF community.

Nancy Paradis

Nancy Paradis, parent

Nancy is a mother of two, based in Kentucky, US. Her daughter, Mallory, was diagnosed with CF in 2016 at the age of 9. Their road to diagnosis was a long and challenging one, but since then, Nancy has become an active member of the CF community with her story that will resonate with many families in similar positions.

What we do

At Raremark, we improve the lives of people with rare diseases by enabling patients and caregivers to become contributors to the future of healthcare. We collaborate with people living with a rare disease, collecting and surfacing real patient data that isn’t available elsewhere. In this way, we build trust, share knowledge, and support research into treatments of the future.

The trend towards real-world data (RWD) and real-world evidence (RWE) has gained fresh impetus in recent years in light of the landmark 21st Century Cures Act. Signed into US law in 2016, the Cures Act requires the FDA to explore the potential of RWE to support the approval of new indications, and to satisfy post-approval study requirements.

As the US medicines regulator gets used to its new obligations, pharmaceutical companies wanting to get ahead of the curve are partnering with Raremark to implement patient-centric RWD programs.

About Raremark

Raremark is an international patient-powered network, partnering with the pharmaceutical industry to accelerate drug development and patient reach. Our patient networks play an active role, providing immediate and ethical access to patient input. 100% of Raremark’s data is collected directly from patients and caregivers, rather than through third-party medical records or insurance claims, and it is surfaced in novel ways.

Using an advanced machine-learning platform, Raremark delivers personalized learning on the latest breakthroughs and treatments, so patients can progress at their own speed and take part in research that is most important and relevant to them.

With three years of engaging and retaining people living with rare diseases, Raremark has built a trusted and connected network. Now with 8,500 subscribers across 14 communities, Raremark is on track to become the world’s biggest patient experience network in rare disease.

Learn more about cystic fibrosis

Click the button below to see the latest news, learn about important research and read about personal experiences from the CF community.

Learn more

Want to partner with Raremark?

To learn how Raremark can get ahead of the curve with real-world data, get in touch with julie.walters@raremark.com

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