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We know how important research into childhood liver disease is to our families which is why we launched our Research Hub, as a means of getting more of you involved. Here two members explain why they have joined.

Courtney who is 16 and has biliary atresia says “I joined the research hub because I felt it was a way in which I would benefit people that need the help. So far, as a hub member I have helped with research and surveys. It’s great to feel that I am doing something so worthwhile and to anyone else who is thinking of joining I would say ‘do it – you have nothing to lose!” Mary, who has a nursing background as well as an MSc in Psychology, joined because her 14 year old nephew received a liver transplant four years ago and is continuing to do well.

“I wanted to get involved because I understand the need for good research leading to evidence based case in all areas of medicine, not least children’s liver disease” she explained. “And I’ve seen the results of research in action with the care and treatment my nephew and his family have received over the years. I also felt that being a part of the hub allows me to pay back in a small way the support which CLDF has given to our family over the years.

“Because of my background I believe I will be useful in seeing things from both sides. I understand the researchers’ enthusiasm for their project but can also see how this can affect the potential participants of any study. So far, I’ve enjoyed it. It hasn’t been overwhelming or demanding. I’m interested in the advances being made in this area of health care so being able to read the research proposals is informative.

“I think everyone who has been affected by childhood liver disease has some experience to offer and could bring fresh ideas to the hub. I would definitely say to anyone who is considering it give it a go. If it’s not for you no-one will mind if you bow out.

If you would like to get involved with CLDF’s Research Hub sign up online HERE 

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