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CLDF NewsResearch News Updates and Blogs

Call for parent and patient voices and experiences

We’re calling on our wonderful parents and young people to support us in sharing patient experience during a paediatric cholestasis workshop to be held virtually on 12th May.

If you are a parent or a young person affected by a Biliary Atresia, PFIC, Alpha 1 Antitrypsin Deficiency and Alagille Syndrome diagnosis, keep reading to find out what this entails and how you can participate.

We would like parents/young people to record a 3-4 minute video about the following:

  1. Parent of a toddler (aged 2-3) who is currently experiencing pruritus – to discuss how this impacts you, your child and your family.
  2. Parent of a child who has previously been impacted by pruritus and has been part of a clinical trial – to discuss how this impacted you, your child and family as well as your experience of clinical trials (e.g. what made you decide to take part and the importance, positives, negatives, what you would say to other parents in that situation, and any improvements you would suggest for trials).
  3. A young person (16-25) who has previously been impacted by pruritus and can talk about the effect it had on them.

We would like one representative to attend the session live so that you can engage with the audience alongside Alison Taylor, our Chief Executive. This session will take place between 15.15 – 15.30 on 12th May 2021.

The meeting is organised by British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and European Reference Networks (ERN). The virtual meeting will bring together colleagues and professionals from around the globe.

If you would be interested in providing your experience, please contact Harpreet (Information and Research Hub Manager) by emailing irhm@childliverdisease.org or calling 0121 212 6029. When contacting, please share which category (1,2 or 3 as indicated above) you would like to be a representative for.

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