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Understanding Rare Disease

A rare disease affects fewer than 1 in every 2,000 people in the general population. However, collectively they are not uncommon as 1 in 17 people will be affected by a rare disease across their lifetime. Over 6000 rare diseases have been identified.

What happens at a Clinical Genetics appointment?

You may be referred to your regional genetics service by your GP, paediatrician or other specialist doctor as part of their assessment of you or your child. However, you can ask for an appointment by self-referral if there is a genetic condition in your family and you are planning a pregnancy or are concerned about whether you could have inherited the condition or whether you could pass it on.

Search our other RAREresources:

Adapting to a Rare Disease Diagnosis  /  Living with a Rare Disease  /  Palliative Issues & Bereavement  / 
Rare Disease Acronyms