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EVENTS FOR PATIENTS AND FAMILIES

Rare Disease Day Family Fun Event: Wednesday 28th February 2018, 4-7pm at Partick Burgh Hall. Come and join us on Rare Disease Day and help raise awareness of rare conditions! There will be lots of fun activities for children and a chance to meet with other families and children living with rare conditions. All ages welcome! Register here by 20th February.

Rare Condition Information Day: Saturday 3rd March 2018, 11am-4pm at the Royal Hospital for Children, Glasgow As part of our Rare Disease Day events, we are hosting an information day for patients with rare conditions, their families/carers as well as professionals working with rare conditions. Register here by 23rd February.

Stickler Syndrome Family Day: Saturday 17th March 2018, 11am-4pm at the Royal Hospital for Children, Glasgow A programme of the day will include talks from healthcare professionals in the morning and informal workshops in the afternoon.

PAST EVENTS:

DiGeorge Syndrome Family Day: Saturday 30th September 2017 at the Royal Hospital for Children, Glasgow. A programme of the day includes talks from healthcare professionals in the morning and informal workshops in the afternoon.

Rare Disease UK Children and Young People Event: Thursday 19th October 2017 at the Royal Hospital for Children, Glasgow Rare Disease UK are coordinating a project that aims to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. Families with children (aged between 5-10) affected by rare conditions, including siblings, are invited to take part in a range of flexible and fun activities to understand their experience of living with a rare, genetic or undiagnosed condition.

Von Hippel-Lindau Syndrome Patient Support Group Day: Saturday 4th November 2017 at the Royal Hospital for Children, Glasgow. Connect with other patients and families and hear talks from healthcare professionals on the condition and its management.

Please get in touch if you would like to find out more about any of our upcoming events.