Parathyroid UK is a small charity for people living with rare and hidden parathyroid disorders. It is the only patient organisation in the UK and Ireland devoted specifically to their needs.
Who we are
We are run by a board of trustees and two committed teams of volunteers (for hypopara and hyperpara) who are patients themselves and understand how challenging and isolating it can be to live with a hidden, rare, unrecognised or long-term condition.
We work closely with our medical advisors , professional societies and many health organisations to help bring about the best treatment and care.
What we do
We are passionate about providing the best possible service for you; everything we do is patient-led and we strive to do it with empathy and integrity.
We campaign for better care and raise awareness to bring about better recognition of the needs of patients living with all the rare hypoparathyroidism conditions, and more recently, with the more common but also hidden hyperparathyroidism conditions too.
We bring together healthcare professionals who work with us to produce information, educate others and identify areas for research.
We have helped to bring about many firsts – clinical trials, treatment and guidelines – but we’re not out of the woods yet. Living with a parathyroid hormone condition of any kind is a complex challenge that still needs better care, understanding, management and treatment.
We reach out around the world to find new patients and found new organisations. We also run European and a World facebook support groups which translate languages so nobody gets left out. For hypopara, we set up a World Hypopara Awareness Day on June 1st to help our global voice grow even stronger, to increase numbers and make us a viable concern for researchers.
Patient support is always our first priority. Our online support groups are safe and welcoming places to learn, share experiences and meet others who ‘get’ it. We are a parathyroid family; our hypopara members are with us for life and our hyperpara members, although eventually cured, may also go undiagnosed for years so many close friendships are made. New members in both groups often comment on how warm and supportive we all are and how much they learn from each other.