We have been asked by CLAPA to publicise the following message:
For the last 30 years CLAPA has been supporting people with cleft lip and/or palate and their families by delivering a wide range of services: whether it’s providing free information and specialist feeding equipment to new parents, running confidence building activities for children or giving support to adults who are looking for further treatment. We also work closely with the NHS specialist cleft teams producing information for generic health professionals, sitting on network boards and representing the patient voice in research. There is more information about our services at www.clapa.com.
CLAPA provides all these services with a small team in London and a network of volunteer branches around the country and we rely entirely on donations and income from the sale of bottles and information materials.
In line with many other charities we are suffering the effects of the economic downturn and we would be very grateful for any support you are able to give us either by setting up a standing order or making a one-off donation.If you are a UK taxpayer and you Gift Aid your donation we can receive an extra 28% from the government.
The link below takes you to the donation page on our website:
With many thanks for your help
Who are we?
The Cleft Collective is the world's largest cleft lip and palate research programme. The project is an initiative of the UK charity The Healing Foundation, supported entirely by voluntary contributions. The Cleft Collective consists of two teams; one based in Bristol and one based in Manchester. The Bristol team are responsible for the establishment and day-to-day running of The Cleft Collective Cohort Studies.
What do we hope to achieve?
A cleft of the lip and/or palate is very common, affecting approximately 1,000 live births per year in the UK. We hope to make significant progress towards answering three key questions that parents often ask:
· What caused my child’s cleft?
· What are the best treatments for my child?
· Will my child be OK as he/she grows up?
How do we hope to achieve this?
With the help of cleft teams across the UK, more than 3,000 children and their families will be invited to participate in the Cohort Studies. Families will be approached shortly after their child’s diagnosis, or during their child’s five-year audit clinic. We will ask our participants to contribute biological samples (including saliva, blood and discarded tissue) and to complete a questionnaire at key time points during the child’s development. Participating families are also asked for permission to link to their medical and educational records, as well as to the CRANE database. Additional studies, including The Cleft Collective Speech and Language Study, will run alongside the main Cohort Studies.
All of the information we collect will be stored anonymously and collated to create a comprehensive resource of data relating to individuals born with cleft and their families. This resource will be made available to researchers and clinicians around the world for ethically approved projects.
Find out more
For more information about The Cleft Collective, please visit www.cleftcollective.org.uk.
To sign up to receive our newsletter, or to contact us about collaboration, please email us: email@example.com.
The Cleft Collective
University of Bristol
Telephone: +44 (0)117 331 0025
You can also follow The Cleft Collective on Facebook and Twitter.
CRANE PROGRESS REPORT
CLINICAL STUDIES GROUP