Making our community’s voice heard

One of Genetic Alliance UK’s key strategic priorities is to provide a strong voice for people living with genetic and rare conditions.

With more than 7,000 genetic and rare conditions, and with serious unmet health needs affecting most, there are many important issues that we need to feed into on behalf of our community. 

Evidence-based approach

A lengthy research process needs to be followed to develop new treatments, improve diagnosis or improve our understanding of genetic, rare and undiagnosed conditions. The best research involves the people who will benefit from the very beginning. 

We are involved in promoting and supporting involvement of our community in research across many fields of research.

Generating knowledge

For different challenges we use different approaches to generate new knowledge. For some challenges, our research team works directly with people who have lived experience of genetic, rare and undiagnosed conditions by carrying out surveys to generate new evidence which we publish in reports. 

We also publish our findings in peer-reviewed journals and present them at research conferences in the UK and Europe. 

Addressing unmet needs

The challenges of addressing the unmet needs of people with genetic, rare and undiagnosed conditions means that a wide range of avenues need to be explored. Some of the tools or techniques that scientists and clinicians need to use to support people living with rare conditions can be ethically controversial. We work with our members to emphasise the value of these approaches to our community, and we hope to protect the ethical use of important techniques such as research involving human embryos and animal research where there is no alternative. We make sure that parliamentarians in England, Scotland and Wales are briefed on the views of people living with genetic, rare and undiagnosed conditions when debates on these topics take place.

For some families reproductive choice is one of the few ways they can take control of the way a genetic condition affects their family. We support reproductive choice and work to make sure all ethical options are open to people and timely information is available to support these challenging choices.

How Genetic Alliance UK amplifies the voice of our community

We prepare consultation responses on behalf of our community and attend meetings of committees and working groups.  We disseminate representation opportunities to our members, and to people living with genetic, rare and undiagnosed conditions. Our team members work closely with government officials to make sure they hear the voices of our community.

Our goal is to make sure that whenever decisions are made that impact on people living with genetic, rare and undiagnosed conditions, someone representing our community is present to make sure the decision is informed by the views of people with lived experience of these conditions.