Family Support
We are here for you
Meet Carol-Anne Partridge – Family Support Champion
Carol-Anne Partridge is our dedicated Family Support Champion. As a qualified social worker (Social Work England Registration Number: SW102105), she has extensive experience in providing support and advocacy for families navigating complex care systems. Due to her lived experience as a parent of a young adult with CDKL5 she understands the emotional and practical challenges families face and is here to help with:
- General Support & Guidance – Offering a listening ear and practical advice tailored to your family’s needs.
- Disability Living Allowance (DLA) Forms – Assistance with completing applications to help secure financial support.
- Social Care Advice – Guidance on accessing services, understanding your rights, and advocating for your loved one.
- Continuing Health Care (CHC) Advice – Support with navigating the CHC process to ensure the best care for your child.
Carol-Anne’s support is person-centred, ensuring families feel heard, valued, and empowered.
“I knew early on in my journey with CDKL5 that I would need the skills to be able to navigate the complex health and care system for my daughter, due to this I retrained as a social worker in my late 30’s, I know it has helped me advocate for not only my daughter but others in the CDKL5 and wider complex needs communities” Carol-Anne Partridge
Counselling Support with Rare Minds
We understand that the emotional impact of caring for a loved one with CDKL5 can be immense. That’s why we are proud to partner with RareMinds, a specialist counselling service that provides emotional support tailored for families affected by rare conditions.
Counselling through RareMinds offers:
- A safe and confidential space to talk about your feelings and experiences.
- Support from trained professionals who understand the unique challenges of living with a rare disorder.
- Strategies for coping with stress, grief, and the emotional toll of caregiving.
You Are Not Alone
We recognise that every family’s journey with CDKL5 is unique, and we are here to provide understanding, encouragement, and practical support every step of the way. Whether you need guidance on forms, social care, health care, or just someone who understands to talk to, CDKL5 UK is here for you.
If you would like to speak to Carol-Anne or learn more about our counselling service, please reach out to us. You are not alone – we are in this together.
Click the button below to complete a contact form via our website, or email Carol-Anne directly at carolanne@cdkl5uk.org.
Be sure to read our Support Confidentiality Statement on our Policies page [click here] to find out what information we capture and how we store it when you contact us for support.