Rareminds is the first specialist, non-profit, rare disease counselling and psychotherapy service in the UK (and possibly globally). Their newly launched Wellbeing Hub is a collection of information and resources to help those affected by a rare disease to live as well as possible.

They cover a wide range of very complex topics:

• Diagnosis – whether genetic testing is considered, or it’s already been done and you’re waiting for results, there will be lots of emotions at these different stages. Even when receiving a diagnosis, there will likely still be uncertainty about the future and the adjustments that will be required.
• Uncertainty, change & loss – undoubtably some of the most sensitive topics, these are explained in depth with helpful examples and, most importantly, with professional advice and useful links and resources.
• Relationships – inevitably relationships will undergo some strain as you navigate complex, difficult feelings and behaviours. Knowing when and how to speak to others around you about the rare condition will likely not be easy or straightforward.
• You & your feelings – the thorough approach on the basics of wellbeing and understanding difficult feelings offers a comprehensive learning platform, with practical advice, therapist tips and techniques for mindfulness, relaxation and coping strategies.
• Navigating healthcare – those affected will face a complex maze of appointments, tests, scans, procedures and interactions with multidisciplinary teams, all while either living independently at home or as an in-patient. While some of the information refers to paediatric care, which doesn’t really apply for either VPS13A or XK patients, there is some useful, more general advice about understanding how to develop new ways of communicating and managing concerns.
• Sources of support – this is a collection of different types of support, including rare disease organisations, general mental health support, financial, social care and educational support, and crisis support.

We appreciate this is a mostly UK-oriented resource while we do address a global audience. We would encourage you to see if there is anything similar to this Wellbeing Hub that is more localised to support your needs better. And we’d love to hear from you if you can share any other similar international initiatives.

You can drop Despina an email at despinadinca@naadvocacy.org or approach us on any of our social media channels.