--- title: Mental health in the rare disease community description: Congenica and partners respond to the UK Government’s open consultation to support mental health and wellbeing   image: https://blog.congenica.com/hubfs/Having%20a%20rare%20disease%20in%20a%20family%20is%20itself%20a%20health%20inequality%20(1920%20%C3%97%201080%20px)%20(1200%20%C3%97%20644%20px).png --- - [Our Customers and Partners](http://www.congenica.com/our-customers) - [Our Product Portfolio](http://www.congenica.com/congenica-products) - **Inherited Diseases** - [Rare Disease](http://www.congenica.com/congenica-rare-disease) - [Inherited Cancer](http://www.congenica.com/congenica-inherited-cancer) - [Prenatal Health](http://www.congenica.com/congenica-prenatal) - [Carrier Screening](http://www.congenica.com/congenica-carrier-screening) - [Neurodevelopmental Disorders](http://www.congenica.com/congenica-neuro) - **Somatic Oncology** - [Solid Tumours](http://www.congenica.com/congenica-oncology) - **Pathogen** - [Pathogen Surveillance](http://www.congenica.com/congenica-pathogen-surveillance) - [Our Services](http://www.congenica.com/congenica-services) - [Clinical Interpretation Services](http://www.congenica.com/congenica-clinical-interpretation-services) - [Professional Services](http://www.congenica.com/professional-services) - [Customer Support](http://www.congenica.com/customer-support) - [Pharma Services](http://www.congenica.com/pharma-services) - Resources - [Publications](http://www.congenica.com/publications) - [Supporting materials](http://www.congenica.com/resources) - [News](https://blog.congenica.com/) - [Events and webinars](http://www.congenica.com/events-webinars) - [About us](http://www.congenica.com) - [Leadership Team](http://www.congenica.com/leadership) - [Quality](http://www.congenica.com/quality) - [Investors](http://www.congenica.com/investors) - [People and Vacancies](http://www.congenica.com/people) - [Contact us](http://www.congenica.com/contact) Login ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) [Overview](https://blog.congenica.com) [Mental health in the rare disease community](https://blog.congenica.com/mental-health-in-rare-disease-community) ![Mental health in the rare disease community](https://blog.congenica.com/hubfs/Having%20a%20rare%20disease%20in%20a%20family%20is%20itself%20a%20health%20inequality%20(1920%20%C3%97%201080%20px)%20(1200%20%C3%97%20644%20px).png) Patient Advocacy RareDiseases Mental Health # Mental health in the rare disease community 7/8/2022    |    0 min read ## **Congenica and partners respond to the UK Government’s open consultation to support mental health and wellbeing **  ### **A collaboration between Congenica, Gene People, Rareminds CIC, UCL Great Ormond Street Institute of Child Health and Addenbrooke’s Hospital, highlights the mental health and wellbeing issues in the rare disease community today.**    Congenica’s Patient Advocacy and Engagement group is today launching its mental health initiative, which will explore different areas of mental health in the context of rare disease. In general, mental health disorders are among the biggest causes of disability worldwide. Research shows that social stresses in early childhood are the most significant risks for depression and anxiety in adolescence, and adolescent mental illness is a risk for depression and anxiety in adult life.    **Mental health in the rare disease community**  There is a significantly higher risk of mental health challenges in the rare disease community. In the UK alone, around 3.5 million people live with a rare disease, but the community affected is far bigger as it includes family members who are involved in day-to-day care and support.     Many people with rare diseases need high levels of health and social care interventions and this can have a big impact on family life, including increased financial pressures and poor mental health. In many cases there may be biological (as well as psychological and social) drivers of emotional and behavioural symptoms. Children with intellectual disability – which is common in the rare disease group -  are also known to have greater need for help with emotional and behavioural symptoms and have higher rates of mental ill-health.     **Response to Government consultation on mental health and wellbeing**  On 12th April 2022, the UK Government’s Department of Health and Social Care called for evidence to seek views on how to improve everyone’s mental health and wellbeing, particularly for people who experience worse outcomes than the general population. As part of a collaboration with [Gene People](https://genepeople.org.uk/), [RaremindsCIC](https://www.rareminds.org/), [UCL Great Ormond Street Institute of Child Health](https://www.ucl.ac.uk/child-health), and [Addenbrooke’s Hospital](https://www.cuh.nhs.uk/), Congenica is pleased to submit the collaboration’s response to this consultation in the context of rare disease.     *It is the view of this collaboration that having a rare disease in a family is itself a health inequality, given the lack of services and understanding for these conditions. In terms of mental health provision for patients and families with rare conditions, it is clear that current mental health services are inadequate. This provision needs to be integrated into services for those with rare diseases.*    Alastair Kent, OBE and Chair of Congenica’s Patient Advocacy and Engagement Advisory Board said: “Mental health has for too long been a Cinderella service in the NHS. The consultation, and the commitment this implies to address this issue, is to be welcomed. Accordingly, this response from a consortium of different stakeholder groups is important, highlighting as it does the particular issues affecting families living with rare and genetic conditions, adding an important additional dimension to the debate.     “The partnership between Congenica, patient organisations, academia, clinical medicine and others is a demonstration of a partnership that will support the opening up of silos. It also represents a desire to move to a more holistic approach for the diagnosis and support of families affected by these devastating conditions.”    [Read our full response.](https://blog.congenica.com/hubfs/GenePeopleMH%20consultation%20response%20Final%20v2%20(002).pdf) --- ### Related articles ![The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(8).png?width=320&height=192&name=Untitled%20design%20(8).png) 2/24/2023 #### [The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/the-road-to-diagnosis-how-genetics-transforms-the-lives-of-rare-disease-patients) In recognition of Rare Disease Day, Congenica looks at the importance of a genetic diagnosis for patients and asks, what's next for rare disease? ![The Real Costs of Rare Disease](https://blog.congenica.com/hs-fs/hubfs/Webinar%20the%20cost%20of%20rare%20disease%20(2).png?width=320&height=192&name=Webinar%20the%20cost%20of%20rare%20disease%20(2).png) 11/25/2022 #### [The Real Costs of Rare Disease](https://blog.congenica.com/the-real-costs-of-rare-disease) Congenica welcomed an expert panel to discuss the true cost of rare disease, from birth to diagnosis, childhood to adulthood. ![Genomics in South Africa](https://blog.congenica.com/hs-fs/hubfs/Patient%20stories%20(2).png?width=320&height=192&name=Patient%20stories%20(2).png) 9/1/2022 #### [Genomics in South Africa](https://blog.congenica.com/genomics-in-south-africa) A personal view of Genomics in South Africa by Diane May, mother to Matthew who has been diagnosed with Morquio syndrome. ##### Congenica is available as a CE Marked IVD clinical decision support platform for clinical diagnostic use for inherited genetic disorders in the UK and EU, Iceland, Lichtenstein, Norway, Switzerland and Turkey. In all other countries, ensuring compliance with relevant local, national and international clinical laboratory regulations is the responsibility of the laboratory. - [Privacy Policy](http://www.congenica.com/privacy-policy) - [Cookie Policy](http://www.congenica.com/cookie-policy) Log in to Congenica ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) ![CE](https://blog.congenica.com/hs-fs/hubfs/CE.png?width=80&height=80&name=CE.png) ![ISO-27001](https://blog.congenica.com/hs-fs/hubfs/ISO-27001.jpg?width=80&height=80&name=ISO-27001.jpg) ![TR-Testmark_9000030872_EN_2024_CMYK](https://blog.congenica.com/hs-fs/hubfs/2023%20website%20images/TR-Testmark_9000030872_EN_2024_CMYK.png?width=80&height=80&name=TR-Testmark_9000030872_EN_2024_CMYK.png) ![HIPAA Compliant](https://blog.congenica.com/hs-fs/hubfs/HIPAA%20Compliant.png?width=80&height=80&name=HIPAA%20Compliant.png) Copyright © 2026 Congenica Ltd. Company number: 8273616 Registered in England and Wales.