This Christmas we are asking for your support to enable us to introduce a much-needed service: psychological support for the pituitary community. Over the past few years, we’ve seen an overwhelming increase in the number of people who call the Endocrine Nurse Helpline in need of support with their mental health. Currently, we are required to signpost callers to other organisations that can help.  However, we want to be there to help support everyone in their hour of need, whether that be regarding medical queries or psychological support.

We know that living with a rare disease “substantially impacts mental health” and that “many of the drivers of poor mental health reflect issues specific to managing rare conditions” (Spencer-Tansley et al., 2022). Many people feel worried or anxious, stressed, low or depressed, emotionally exhausted and alone. Carers are also negatively impacted psychologically when supporting someone with a rare disease.

We would like to team up with Rareminds, a company that provides mental health support services to anyone affected by a rare disease. They provide timely access to highly specialised professional services and work in partnership with rare disease charities to offer individual and group counselling/psychotherapy, workshops and psychoeducational resources. Their clinical team is made up of counsellors and psychotherapists. They have received additional training in the extensive psychosocial, physical and mental health challenges faced by those diagnosed with a rare disease.

Currently Rareminds is the only specialist third-sector provider of counselling and mental health support to the UK rare disease community. A service that would have been welcomed by Charlotte below:

“I struggled for years to receive a diagnosis and when I was diagnosed I felt like I was the only person with this terrible disease. Then I discovered The Pituitary Foundation and they became my rock. I wish they had had psychological support available back then and I think it’s really positive that they are looking to introduce it now, they certainly have my full support.”

To donate please visit our JustGiving page.

On behalf of the pituitary community we would like to thank you in anticipation of your generous support.