Project Announcement

Photo courtesy of Mary Rose Roberts/Findacure

Today I had the opportunity (thank you, Findacure!) to announce the start of the project at their Drug Repurposing for Rare Diseases Conference. I was really happy to hear from quite a few people in the breaktime after the talk - looking forward to setting something up!

You can view my slides and listen to my presentation here.

If you are a rare disease patient interested in participating in the project, please go to this simple form, provide a few of your details, and I'll get back to you as soon as possible!

APPLY HERE

About this project

The 1 in 17 project focuses on the individuals behind rare disease statistics and numbers. The goal is to raise awareness of the paradox of how common rare diseases actually are, by creating a candid, honest photographic essay about each person. How they spend their days, the challenges they invariably have, but also who they are as people - looking beyond their condition.

The photos will also be made freely available to any related organisation who wants to use them for their own website or social media in connection with the project.

If you're interested in potentially taking part, or would like more information, please email 1in17project@gmail.com.

In support of...

Findacure is a UK charity that builds the rare diseases community to drive research and develop treatments. Rare diseases are defined in the EU as conditions affecting less than 1 in 2000 people — though they come much rarer than this. Because of their small patient populations, rare diseases are often assumed to be unimportant. This leads to a lack of support for patients and families, neglect by the medical profession, and little ongoing research into treatments. Findacure empowers rare disease patient groups through a series of training programmes, and encourages collaboration between rare disease stakeholders to advance research.

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