News‎ > ‎


posted 11 Mar 2019, 06:52 by Cherelle Augustine   [ updated 25 Mar 2019, 04:53 by Derryn Lovett ]

This Sickle Cell Life

Your expertise needed to support young people!

We invite you as an expert in your field to join young people on April 2nd at an innovative and interactive event to help shape services of the future. The Royal College of Paediatrics and Child Health (RCPCH) is working with the London School of Hygiene and Tropical Medicine (LSHTM) on a project to transform understanding, awareness and knowledge about a the UK's most common inherited genetic disorder that has a huge impact on young people as they transition to adulthood and adult healthcare services in London and across the UK. We believe that in order to start the journey to creating lasting change, children, young people, families, patients, specialists, and stakeholders from a wide range of sectors such as yours need to be involved. 


On April 2nd 2019 from 10am – 4pm, we will be running “This Sickle Cell Life”, sharing findings from the 3 year research programme conducted by LSHTM. We will then invite attendees with and without Sickle Cell / Thalassemia experience, to help co-produce a range of useful materials that can be used by your colleagues, peers and your sector to better understand how to support young people and families living with these conditions now and into adulthood. 


The event will be interactive and workshop based, with young people, young patients, workers and decision makers from a range of backgrounds and disciplines. Attendees will have the chance to learn about what young patients need from services such as health, education, leisure and social care services to support their journey with Sickle Cell / Thalassemia whilst sharing their sector expertise to help develop messages and achieve hopes and wishes.


It is important to the success of the project to have your insight as part of the day and we really hope you or a colleague will be able to join us.


If you would like to find out more about the project, please check the Sickle Cell Life twitter or the Sickle Cell Life projectpage . I have also attached a team flyer for the Children and Young People’s Engagement Team at the RCPCH who lead the RCPCH&Us Network to ensure that children and young people are actively involved in shaping healthcare and policy across the UK.


To confirm your attendance or suggest a colleague, please contact Emma Sparrow at RCPCH via by March 11th.