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A leaving message and some exciting news from Chief Executive, Alison Taylor

After eight and a half years as Chief Executive of CLDF it’s time to say goodbye. It’s been an honour and a privilege to lead this unique charity and I feel proud of what we have achieved, particularly during the past two years which have been incredibly challenging due to the financial impact of the pandemic. The fact that we are still here, working with families who need us, is largely down to our wonderful supporters and the amazing CLDF team, both of whom I will miss greatly. 

However, I am delighted to be leaving on a positive note. We have received confirmation that today (Friday, 14 January 2022) NICE has published final draft guidance which recommends odevixibat in line with its marketing authorisation as an available treatment option for people aged 6 months and older with all types of progressive familial intrahepatic cholestasis (PFIC).  When the final stage of the drug approval process is concluded, this ground-breaking drug has the potential to transform the lives of children and young people living with PFIC. 

I‘m proud of the pivotal role we’ve played in working with the stakeholders to get to this watershed moment. There have been significant challenges along the way, including NICE’s initial decision not to recommend the drug for the treatment of PFIC. Our families were closely involved, sharing their personal experience as part of the appeal process and we are truly grateful to everyone who took the time and trouble to help with this project. What a fantastic result you have helped bring about for your own children and for future generations. We look forward to sharing more information on odevixibat and how the patient voice made such a difference, once the final stage of the NICE approval process is concluded. 

I’m delighted to announce that Katherine Myles will be taking over as CLDF’s interim Chief Executive on Monday. I’ve had the pleasure of working with Katherine this week and it’s good to know that you are all in safe hands. 

I will always be a CLDF supporter, cheering on this small but mighty charity from the sidelines and I wish you and your families all the very best for the future. 

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