GET INVOLVED
Join the movement
Many ways to support our work , whatever your time, skills, or resources allow.
Embedded Files
Family Support Group
A space just for affected families to connect and share experiences with others who understand.
Get Social
Follow us, reshare our posts, and tag others on your own posts to help spread awareness.
Share Your Story
Add your experience to our lived experience library and help others feel less alone.
Research Collaboration
Are you a clinician or researcher? We actively seek collaborators for research projects, case studies, and clinical partnerships.
Volunteer
We welcome volunteers in communications, from communications and fundraising to community support and beyond. Whatever you can offer, we'd love to hear from you.
Corporate Partnership
Partner with us through employee fundraising, cause-related marketing, or sponsorship of specific research projects.
Spread the Word
Share our mission, write to your MP, or speak to your employer. Visibility is vital for underrecognised conditions.
Fundraise for Us
Set up a fundraising challenge for a marathon, sponsored event, or birthday fundraiser. Donations open once charity registration is complete.
Pro Bono Support
We welcome pro bono support from legal, accountancy, HR, and communications professionals who share our values.
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