A parent's story

Andrew (pictured left) shares their story in the video below, from discovering the cleft in hospital when she was 3 days old and unable to breast feed, to the numerous surgeries as she grew older and then subsequently, the many years of orthodontic treatment.

After Alanna was treated by Brian Sommerlad at Great Ormond Street Hospital, Andrew become a trustee of CLEFT in 2007. From experiencing cleft treatment in the UK first hand, he particularly understands the value of research into cleft lip and palate and knows just how fortunate we are to have the NHS in the UK where multi-disciplinary cleft teams give the best possible treatment.

Alanna has had the fortune to be born in a country where comprehensive cleft treatment can be given but she hasn't had an easy time. Nevertheless, she is grateful for the treatment she has received... and for her perfect smile!!

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Privacy Policy
At CLEFT, we’re committed to protecting and respecting your privacy. This Policy explains when and why we collect personal information about people who contact us, how we use it, the conditions under which we may disclose it to others and how we keep it secure.
We may change this Policy from time to time so please check this page occasionally to ensure that you’re happy with any changes. By using our website, you’re agreeing to be bound by this Policy.

Any questions regarding this Policy and our privacy practices should be sent by email to [email protected] or by writing to CLEFT, 10a Warren Estate, Lordship Road, Writtle, Chelmsford, Essex CM1 3WT. Alternatively, you can telephone 01245 421901.

Who are we?
We are CLEFT, we support cleft lip and palate teams in poorer countries by working with local surgeons and other specialists to help them develop high quality multidisciplinary cleft centres. We do this by visiting and working with them regularly, helping to provide education and training and donating much needed equipment. Our goal is to help local teams so that children born with clefts in these countries will have the same opportunities as those in the UK.

CLEFT also supports research in the UK which will potentially benefit the much greater number of cleft lip and palate patients in countries other than the UK. Our research projects include a pilot project to develop techniques for 3-D MRI scanning of the palate, a study of the muscles of the soft palate to try to improve the quality of the surgery as well as investigating submucous cleft palate development and therapy.

CLEFT is a registered charity (no. 1119630). The registered address is CLEFT, 10a Warren Estate, Lordship Road, Writtle, Chelmsford, Essex CM1 3WT.

How do we collect information from you?
We may obtain information about you when you contact us about what CLEFT does, register for one of our events, to make a donation or if you register to receive one of our newsletters.

What type of information is collected from you?
The personal information we collect might include your name, address, email address, phone number, and birth date. If you make a donation online or by phone, your card information is not held by us, it is collected by our third party payment processors, who specialise in the secure online capture and processing of credit/debit card transactions, as explained below.

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We may use your information to:
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We review our retention periods for personal information on a regular basis. We are legally required to hold some types of information to fulfil our statutory obligations (for example the collection of Gift Aid). We will hold your personal information on our systems for as long as is necessary for the relevant activity, or as long as is set out in any relevant contract you hold with us.

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Third Party Service Providers working on our behalf: We may pass your information to our third party service providers, agents subcontractors and other associated organisations for the purposes of completing tasks and providing services to you on our behalf (for example to process donations and send you mailings). However, when we use third party service providers, we disclose only the personal information that is necessary to deliver the service and we have a contract in place that requires them to keep your information secure and not to use it for their own direct marketing purposes. Please be reassured that we will not release your information to third parties beyond the CLEFT Network for them to use for their own direct marketing purposes, unless you have requested us to do so, or we are required to do so by law, for example, by a court order or for the purposes of prevention of fraud or other crime.

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We will not contact you for marketing purposes by email, phone or text message unless you have given your prior consent. We will not contact you for marketing purposes by post if you have indicated that you do not wish to be contacted. You can change your marketing preferences at any time by contacting us by email: [email protected] or telephone on 01245 421901.

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The accuracy of your information is important to us. We’re working on ways to make it easier for you to review and correct the information that we hold about you. In the meantime, if you change email address, or any of the other information we hold is inaccurate or out of date, please email us at: [email protected], or write to us at: CLEFT, 10a Warren Estate, Lordship Road, Writtle, Chelmsford, Essex CM1 3WT. Alternatively, you can telephone 01245 421901.
You have the right to ask for a copy of the information CLEFT hold about you.

Security precautions in place to protect the loss, misuse or alteration of your information
Non-sensitive details (your email address etc.) are transmitted normally over the Internet, and this can never be guaranteed to be 100% secure. As a result, while we strive to protect your personal information, we cannot guarantee the security of any information you transmit to us, and you do so at your own risk. Once we receive your information, we make our best effort to ensure its security on our systems.

Links to other websites
Our website may contain links to other websites run by other organisations. This privacy policy applies only to our website‚ so we encourage you to read the privacy statements on the other websites you visit. We cannot be responsible for the privacy policies and practices of other sites even if you access them using links from our website.

In addition, if you linked to our website from a third party site, we cannot be responsible for the privacy policies and practices of the owners and operators of that third party site and recommend that you check the policy of that third party site.

16 or Under
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Review of this Policy
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Donate

You can make a one-off donation today or sign up to giving a regular monthly gift. All donations, small or large, will help us to improve the lives of those born with cleft lip and palate both now and in the future. 100% of your donation today will go towards funding an international or research project thanks to a charitable trust covering all our administrative costs until February 2025.
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CLEFT was established in 2007 by cleft surgeon Brian Sommerlad - based at Great Ormond Street Hospital for Children, together with a former patient and a patient's grandmother.
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Investigations into the genetics of cleft lip and palate to understand more about why cleft lip and palate occurs.
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For over 40 years, I have been involved in operating on babies, children and adults who have been born with cleft lip and/or palate.
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