Free counselling service for mitochondrial disease patients and families
The Lily Foundation is proud to partner with Rareminds to offer a free, confidential counselling service for patients and family members aged 18+ who have been impacted by a mitochondrial disease diagnosis. This specialised support service is designed to help you navigate the emotional challenges that come with living with mitochondrial disease.
We offer six to twelve counselling sessions via Zoom or telephone. Both evening and daytime appointments are available (weekdays only).
Emotional support for mitochondrial disease sufferers
Living with mitochondrial disease affects every aspect of life, from your health to your relationships and emotional wellbeing. Our counsellors provide a safe space where you can discuss anything related to the emotional impact of mitochondrial disease, including:
- how your diagnosis affects family, social or work relationships
- anxiety or low mood
- identity issues, such as feeling different, lonely or isolated
- managing difficult, unpredictable or worsening symptoms
- the psychological burden of being the ‘mitochondrial disease expert’
- coping with unpleasant medical tests or treatments
- making difficult decisions about care or treatment
- concerns or fears about the future.
Meet our counsellors
The Lily Foundation Counselling Team are Rebecca Hargreaves (Lead Counsellor) and Louise Brookes. Both are trained and experienced therapists who have undertaken additional training with Rareminds on Counselling for Rare Diseases.
A safe, confidential space
Accessing counselling can sometimes be difficult. The Lily Foundation counsellors provide a safe, confidential relationship where you can explore difficult thoughts and feelings, and discover new ways to approach your challenges.
Availability and waiting list
Since launching in early 2024, we’ve seen an overwhelming demand for this service and the team at Rareminds are working at capacity. Due to such high demand, unfortunately we’re currently unable to accept new referrals until early 2025. If you believe you would benefit from our counselling service, please email [email protected], using the subject line The Lily Foundation counselling. We’ll add your name to the waiting list and contact you once referrals open again in 2025 to arrange an initial consultation.
In addition to their counselling service, Rareminds have launched a Wellbeing Hub, a resource centre aimed at helping individuals affected by rare diseases to navigate some of the more common emotional challenges they may encounter. Whether you need practical advice, emotional support or help managing uncertainty about the future, the Wellbeing Hub offers valuable resources to support you and your loved ones.
