Welcome to
GRI-UK

We support and empower individuals and families affected by GRI disorders so that those diagnosed can lead the best life possible.

WHAT WE DO

What are we doing at GRI-UK?

Raising awareness

Increasing public and medical community awareness about GRI disorders to foster understanding and support, including within the NHS, of the symptoms, needs and medical conditions, to help enable better and faster access to diagnosis and treatments.

Advocating for research

Promoting and funding research to find effective treatments and ultimately, a cure for GRI disorder, fostering collaboration among diverse stakeholders, bringing together patients, parents, family members, medical professionals, researchers, scientists, pharmaceutical, bioscience and academic communities.

Supporting and empowering individuals and families

Offering emotional and practical support to families affected by GRI disorders so that those diagnosed can lead the best life possible.

Building Community

Creating a network where families can connect, share experiences, and find strength in solidarity.
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FAMILY resources

Family support

We believe anyone with a GRI condition in the UK should be able to access the right information, to help diagnose, treat, care and manage all aspects of GRI disorders to promote better outcomes for people living with GRI disorders.

Research

Know more about what's happening

GRI(N) Patient Registry

The GRI(N) Patient Registry is a crucial resource designed to collect, manage, and utilize health information from individuals affected by GRI-related disorders.

GRI Global Census

The GRI Census has been designed to collect information about GRI patients to better understand the natural history of GRI-Related Disorders and gain more insight into the symptoms.

Simons Searchlight

Simons Searchlight is an international study of people who have rare genetic disorders. It gathers information to learn about how these genes cause different neurodevelopmental disorders.

SUPPORT US

Sponsor our work

shop

Shop

We are planning an exciting online shop for you to purchase GRI-UK products. Come back here soon to find updated news and information

Fundraising

There are countless ways you can support GRI-UK and help us provide the necessary support and advice to families affected by GRI conditions. Here are some fun and impactful ways you can get involved:

Volunteer

As we embark on our mission to support families affected by GRI conditions, we are seeking individuals with a variety of skills and experiences to help GRI-UK become a stronger organization.