Join our support group
Our hypopara support group on Facebook is a very special place. Our members with a lifelong condition call us their ‘hypopara family’. Having a rare condition can be isolating but in the group we get to know each other well and there is always someone there if you have a problem or a question or just want to drop in to let us know how your appointment went.
Our group is a caring , friendly and supportive place and we have lots of positive comments about it. We’ve been running support groups since 2005 so we have a great deal of experience offering support and advice. We can help you learn how to manage your calcium levels, recognise and understand what your symptoms mean, find you an endocrinologist with expertise in calcium matters or put you in touch with other patients in your area. No question is too small or too silly, every question helps others to understand more about their condition too.
Our group is called HypOpara@Parathyroid UK and is a members only group for people in the UK and Ireland who have (or think they may have) any form of hypoparathyroidism. It is run by a group of expert patients who have hypopara themselves. We support patients and their families with all types of hypoparathyroidism , psuedohypoparathyoridism and CaSR conditions.
It is a closed group so your privacy is ensured. We also keep the group UK & Ireland based so that we can build and share local resources and networks to help you find what you need.
Over 800 people have joined to date. Many make friends and get to know each other quite well online and in the real world. For many of our members the group is a lifeline.
It was like stepping off a desert island when I discovered there are a group of other people like me! It was such a relief to no longer be coping alone.
How to join
Membership of our support group is only open to members of Parathyroid UK. You will need to register here as a member and we will then send you an invitation to join the facebook support group.
Why become a member?
Become a member of Parathyroid UK and you will help to build a network of professionals, patients and others who want to learn more and raise awareness about parathyroid conditions.
Please join – the larger our membership the stronger our voice with government agencies, the medical profession, research bodies, funders and other organisations.
Already we have made a big difference but we still have a way to go.
Membership of Parathyroid UK is free and our support and information comes with the full backing of the medical profession. Membership also offers you bi-annual newsletters and news updates about research and clinical trials in which you may be able to take part.
To keep up to date with information and events please ‘LIKE’ our main Facebook page.
Patient Information leaflets
You may download and print these our leaflets (see link at the bottom of this page). You can also order copies of our Hypoparathyroidism leaflets by enclosing a stamped, addressed envelope (DL size for 1- 5 leaflets, A5 size for 6 – 20 leaflets) to: Parathyroid UK, 40 Old London Road, Hythe, KENT, CT21 4DQ.
Liz says ‘You can speak to me on the Hypopara Helpline on 01342 324091. Weekdays only please. I’m not always here or able to take your call but leave your name and number and I will get back to you.’