© Genetic Alliance UK 2023
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Rare Disease is complex. Obtaining rare disease medicines shouldn't be.
Rare Disease is complex. Obtaining rare disease medicines shouldn't be.

Overview

Around 3.5 million people in the UK will be affected by a rare disease at some point in their lives. Despite this, it is incredibly difficult for patients to access potentially life-changing treatments because of the many flaws in our systems and two fundamental problems that we haven’t been addressing: money and unrealistic expectations from decision-makers.

The Action For Access report details the problems in the system, and the changes Genetic Alliance UK want to see implemented in order to benefit the lives of those with rare diseases, and their family and carers.

Together, let’s call for #ACTIONFORACCESS

Campaign Downloads

Support the Action For Access campaign

Our report details the changes we want to see to improve the assessment process for rare disease medicines. However, change isn’t going to happen overnight. We need your support in helping our voice to be heard.

Register your email address so we can let you know about the progress we make and what’s next for the Action For Access campaign.

Support Our Cause