Forum
At the request of our patients, we established a forum for patients to discuss issues relevent to them. This is hosted on an external website - HealthUnlocked.com - this is the world's largest social network for health. The channel is called 'Cystinuria Support' and is intended for all patients to be able to use worldwide to exchange stories and ideas. Some patients help run this site and whilst we have admin rights and often do reply to general queries, we cannot give individual advice and medical opinion should always be sought from your own specialist or general practitioner.
Feedback has been very positive and there are numerous threads that patients with cystinuria or family members might find useful. Click on the image below to explore the forum and do consider registering (this can be anonymous) and contributing to the discussion.
We are a peer-support group for patients around the world with cystinuria to share stories and ask questions. Cystinuria is a very rare cause of kidney stones and patients rarely get chance to meet any others with the disease. This community provides the opportunity to link with other patients to enable dissemination of stories, advice and tips that others have found useful to manage the disease.healthunlocked.com/cystinuria-support