Get involved in Rare Disease Day 2018
Wednesday 28th February 2018
Today is Rare Disease Day 208, the international event held each yearon the last day of February.
The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers. About rare diseased and theirimpact on patient's lives.
Today is Rare Disease Day 2018, the international event held each year on the last day of February.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
How can I get involved in rare disease day?
Children, parents, patient organisations, health professionals, public health authorities - everyone can get involved in Rare Disease Day.
Ways to get involved include sharing your child's story on the Rare Disease Day website, joining in on social media, or becoming friends with a partner organisation.
Find out more on the Rare Disease Day website.
Our rare condition resources
Online medical information
We have an online A-Z of medical conditions with over 400 conditions and syndromes, each with information about symptoms, treatments and support groups where they are available. If you can't find a condition online, contact our freephone helpline because we have many more records offline.
On our website you can also read all about diagnosis, including the support available for children who don't have a diagnosis. Getting a diagnosis can be difficult for children with rare conditions, but they are still entitled to social services needs assessments, support in education and certain benefits like Disability Living Allowance, which don't require a diagnosis to be paid.
Our diagnosis guides
For further information on common issues around diagnosis, you can read our guides written for parents of disabled children:
- About diagnosis: Living without a diagnosis [PDF]
- About diagnosis: Living with a rare condition [PDF]
- About diagnosis: Developmental delay [PDF]
Our online community
Join our online community and sign up to a condition group to find other parents whose child has the same condition.
You can also chat to other families online about anything and everything that affects you and your child - from medical conditions to healthcare, holidays and higher education. Get tips, advice and support from other parents in one safe and trusted space.