We are pleased to be working in partnership with Rareminds – the first specialist, non-profit, rare disease counselling and psychotherapy service in the UK.
Rareminds provide a free and confidential online counselling service to families who are affected by CDKL5 Deficiency Disorder (CDD).
All Rareminds therapists are fully trained and experienced counsellors, psychotherapists or psychologists accredited (or in the latter stages of working towards accreditation) with a recognised Professional Body. All Rareminds counsellors have also completed a BACP approved training in offering Online Counselling, and Rareminds innovative.
Their story:
“In the mid 1990’s, shortly after the birth of their first child, and just as Rareminds founder Kym was completing her training as a psychotherapist, her late husband was diagnosed with a rare cancer. This was long before the internet was available to facilitate the connectivity it does today and information was hard to find.
Fast forward to 2013 and Kym’s two teenage children were unexpectedly diagnosed with a rare underlying genetic condition – the same condition that had led to their father’s cancer. This diagnosis would now require their own life-time surveillance, treatment and would have consequential implications for their own future life choices.
From her original experiences as a partner and now as a parent, Kym is acutely aware that there is a high emotional burden for everyone impacted by rare diseases. This is compounded by insensitive diagnostic delivery, lack of awareness about mental health needs, and generic approaches by healthcare professionals that do not take into account the complexity of living with a rare disease.”
How to access this service
If you are a person with a diagnosis of CDKL5 Deficiency Disorder (CDD), or if you are a parent, carer or family member of someone diagnosed with CDD, and you feel you would benefit from this service, please e-mail raremindscdkl5@uhbw.nhs.uk. Here, CDKL5 Research and Care Coordinator, Emma Claydon, will provide you with the contact details of the Rareminds CDKL5 Lead Therapist. You will then be able to make contact with the service when you feel ready to. CDKL5 UK and the CDKL5 Centre of Excellence will not be involved any further in this process, unless you specifically request it.
You can read more about the amazing work of Rareminds, on their website, here: About Us – Rareminds
