Children’s Liver Disease Foundation is here to act as the voice for all children and young people affected by liver disease and their families. We want to ensure your voice is heard as we campaign to improve prevention, diagnosis, treatment and service delivery.
In order to do this effectively, CLDF is a member of a number of organisations who bring different charities together to campaign more effectively. Our current campaigning priorities are:
Promoting organ donation is one of CLDF’s key campaigning activities. CLDF is one of 15 charities involved in a campaign called the ‘Donation Conversation’.
The UK has one of the lowest rates in Europe for families supporting organ donation and in 2014/15 only 57% agreed to donate their family members’ organ after they died. Since 2010 this has meant more than 1,200 people missing out on a potentially lifesaving transplant. In the last five years over 500 families in the UK have said no to donation, despite their relative being on the organ donor register.
We are aiming to increase the family consent rate from 57% to 80% by 2020, by asking everyone to “have the donation conversation”.
CLDF has long campaigned for universal vaccination for children against hepatitis B in the UK. The Hepatitis B virus, which puts people at high risk of death from cirrhosis of the liver and liver cancer, has infected an estimated two billion people worldwide and around 600,000 people die each year as a result. As many as 90% of newborns infected with the virus will develop chronic Hepatitis B and will be at risk.
It has recently been confirmed that the UK will join the 184 other countries in the world who already vaccinate infants against hepatitis B. Hepatitis B will be included in the universal vaccination programme from Autumn 2017.
This is a great result for CLDF and everyone who has campaigned for the introduction of the vaccine.
The National Institute for Health and Clinical Excellence (NICE)
NICE provides evidence based guidance and information for commissioners and providers of healthcare. The advice is produced for England but is often followed by the devolved healthcare systems as well.
CLDF plays an active role in reviewing and commenting on guidelines, information and advice for healthcare professionals to ensure patients and families are at the heart of all decisions.
Obesity Health Alliance (OHA)
CLDF is a member of the OHA which is a collaboration of over 40 organisations who have joined together to fight obesity.
Almost 1 in 5 children are overweight or obese when they start primary school and based on current trends, half of all children will be obese or overweight by 2020. CLDF is particularly concerned about the impact on the liver health of children affected as obesity is a risk factor for non-alcoholic related fatty liver disease (NAFLD).
CLDF works with the OHA to develop and advocate evidence-based policy recommendations and to influence policy makers and the media in order to tackle the obesity crisis.
Prescription Charges Coalition
The Prescription Charges Coalition is a group of over 40 organisations campaigning to end unfair prescription charges for people with long-term medical conditions. Whilst prescriptions are free for those under the age of 16, or 16-18 and in full time education, the burden of prescription charges on young people can be huge. CLDF works with the coalition to campaign for all long term conditions to be eligible for free prescriptions.
CLDF is also a member of:
European Reference Network