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Invitation to young people with a rare condition

Calling young people with GSD

If you are aged 18-25 this is your chance to meet, share, listen, network and speak about your experience of living with a rare condition.

Central London, 10th July

On Wednesday 10th July, representatives from the patient community, support organisations and advocates will meet alongside healthcare professionals and policy makers. The afternoon is hosted by the Royal College of Paediatrics and Child Health (RCPCH).

Talks and presentations

Young people and patient advocates will speak on their experience of rare disease, including:

  • The mental and social challenges of living with these conditions.
  • The place of rare disease within the medical education curriculum.
  • The importance of peer support networks in creating a secure space for young people to share their experiences.

The keynote speaker will be Baroness Blackwood, Parliamentary Under Secretary of State for Health and Innovation, and presentations will also be received from:

Would you be interested to attend with GSD?

The event is free. If you would like to attend and maybe write a report for our AGSD-UK magazine, Glisten, please phone Jane Lewthwaite on 0300 123 2790. We might be able to help with your travel costs.

Information: for more information and to book, please email or phone Richard Lynn on 0207 092 6173

Where: Royal College of Paediatrics and Child Health, 5-11 Theobalds Road, London, WC1X 8SH

When: Wednesday 10th July 2019, 13:00-17:00

Photo: a panel of young people chat to the delegates at a previous RCPCH Children & Young People event.