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Living With A Rare Disease

May 07, 2021

* This post is written by a guest blogger - it is not sponsored. *

Living with a rare disease? We need your help!

In 2015, the UK health agency NICE was asked to fund a new drug for children with Duchenne Muscular Dystrophy. Parents waited over two years for a decision to be made. But in that time, their children stopped walking, meaning the drug would no longer help.

This is happening all over the world. Forcing patients and their families onto an emotional rollercoaster leading to preventable heartache. Because of this, reforms are urgently needed.

Each person’s experience of disease is unique. Yet national health agencies often don’t have the right data and tools to assess whether drugs for rare diseases are worth funding. Until now…

We're launching an initiative to secure a widespread policy reform for rare disease treatment access throughout the UK and Europe.

The purpose being to equip national health agencies with tools and data-gathering mechanisms to assist better drug funding decisions. Not only are we backed by leading charities, academics and industry organisations, our team has over a decade of experience in international policy reform.

We’re a collective of activists, political strategists and NGOs. Our fearless leaders Danielle and Amy have succeeded in influencing policy debates and decisions across the UN, EU and national governments. Check out Danielle in the pictures below working with Mark Ruffalo and Hollywood blockbuster Dark Waters to secure an EU-wide ban of dangerous PFAS chemicals!

To make this all a reality, we want to hear your story! 

We want to know how access to treatments (or lack of) has shaped your experience living with a rare disease? Along with how it has impacted your quality of life? Whether it’s your personal experience or a loved one in your care, simply click the button below and complete the form to get involved. Someone from our team will then be in touch to chat about your experiences!

This initiative was inspired by, and launched in partnership with a new documentary film “A Space in Time” - a candid, lyrical, intimate portrait of one family’s struggle to transcend a fatal muscle wasting disease, Duchenne. A Space in Time will be released in UK cinemas on May 17, but you can watch the trailer here in the meantime!

A blue banner with information on the writer of this blog - Elliot! Along with an image of Emma standing against a multicolour wall. He is wearing burgundy to and smiling directly at the camera.