Who we are
SLC6A1 Connect is a patient advocacy organization focused on supporting individuals and families affected by SLC6A1-related disorders, which are rare neurological conditions caused by mutations in the SLC6A1 gene.
The role
Help guide a rare disease charity through its next chapter
?SLC6A1 Connect UK is seeking Trustees with expertise in charity law, compliance, data protection, contract management, finance, or charity governance to join our board and help us grow sustainably.
This is a chance to use your professional skills to support a small, impactful charity and help shape its future.
What We’re Looking For
We’re especially keen to hear from people with experience in:
- Charity law and regulatory compliance
- Data protection and GDPR
- Contract negotiation and management
- Financial planning, budgeting, and reporting
- Charity governance and strategic oversight
Soft skills we value:
- Evaluating diverse viewpoints
- Sharing workload and supporting the team
- Adapting to shifting priorities and deadlines
Why Join Us?
- “The charity gives me hope and comfort that someone is working tirelessly to help find a cure for our children.” Dan, parent of a six-year-old diagnosed with SLC6A1
- “The charity is the only resource available to myself and my family with knowledge of my son’s rare genetic disease. It provides emotional support, in addition to offering relevant information and referrals to other professionals and families. By collaborating through this network, we are better positioned to pursue a cure or treatment.” – Helen, parent of an individual diagnosed with SLC6A1 at the age of 30
- “Volunteering with SLC6A1 Connect UK has given me a sense of purpose and belonging during a journey that can often feel isolating. Being part of this community means connecting with others who truly understand, sharing hope, supporting vital research, and working together to create a better future for our children.”
You’ll be joining a charity that is:
- Led by lived experience
- Focused on impact and innovation
- Ready to grow with your guidance
?What We Offer
- A
chance to shape the future of a rare disease charity - Governance
experience and leadership development - Opportunities
to advocate nationally and build networks - A
meaningful way to use your skills for good
FAQs
- “I
don’t think I have enough time.”
We estimate around 4-6 hours per month, including quarterly board
meetings and one strategy day per year. - “I’ve
never been a trustee before.”
We welcome all backgrounds and provide support to help you succeed.
How to Apply
Send your CV and a short cover letter to Lindsay
Randall (lindsay.randall@slc6a1connectuk-aq.org)
by Wednesday 5th November. If you
have any questions about this position, please reach out to Lindsay.
