Global Cleft Care, Patient Involvement and Cleft Research Webinars this March

In partnership with the Craniofacial Society of Great Britain and Ireland (CFSGBI) and CLAPA, CLEFT will be hosting two of the three CFSGBI pre-conference webinars for clinicians, trainees and students involved to attend. The third will be hosted by CLAPA. There will be a number of speakers and an opportunity for questions at the end so if you would like to register, sign up by clicking the links below.

Global Cleft Care

First in the series will be 'Global Cleft Care' hosted by the CLEFT International Steering Committee. They will be addressing the question 'How can you and your team make a difference in low and middle-income countries?'

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The webinar will take place by Zoom on Tuesday 5th March at 6pm, with recordings made available to all registrants.

Patient Involvement

The second in this webinar series will be shining the spotlight on patients and families, specifically how CLAPA and the NHS work together to provide support to patients and their families throughout their cleft journey. This webinar is scheduled for Wednesday 13th March and will be hosted by CLAPA.

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The webinar will take place by Zoom, hosted by CLAPA, on Wednesday 13th March at 6pm., with recordings made available to all registrants.

Cleft Research

Following this, later in the month, the webinar will be focusing 'Cleft Research' hosted by the CLEFT Research Steering Committee. They will be addressing the question 'What support is available to help support and fund cleft research?'

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The Cleft Research webinar will take place by Zoom on Thursday 21st March at 6pm, with recordings made available to all registrants.

At CLEFT we are extremely proud to be partnering up with CFSGBI and CLAPA to help provide long-term sustainable cleft care worldwide. We hope you will join us to see how you can become more involved.

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We will always store your personal details securely. We'll use them to provide the service that you have requested, and communicate with you in the way(s) that you have agreed to. Your data may also be used for analysis purposes, to help us provide the best service possible. For full details see our Privacy Policy or contact us on 01245 421901.

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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.

How is your information used?
We may use your information to:
• process a donation that you have made;
• to carry out our obligations arising from any contracts entered into by you and us;
• seek your views or comments on the services we provide;
• notify you of changes to our services;
• send you communications which you have requested and that may be of interest to you. These may include information about campaigns, appeals, other fundraising activities;
• process a grant or job application.

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.

Who has access to your information?
We will not sell or rent your information to third parties.
We will not share your information with third parties for marketing purposes.

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.

Third Party Product Providers we work in association with: When you are using our secure online donation pages, your donation is processed by a third party payment processor, who specialises in the secure online capture and processing of credit/debit card transactions. If you have any questions regarding secure transactions, please contact us.

Your choices
You have a choice about whether or not you wish to receive information from us. If you do not want to receive direct marketing communications from us about the vital work we do in other countries and our research here in the UK then you can select your choices by ticking the relevant boxes situated on the form on which we collect your information.

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.

How you can access and update your information
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
We are concerned to protect the privacy of children aged 16 or under. If you are aged 16 or under‚ please get your parent/guardian’s permission beforehand whenever you provide us with personal information.

Review of this Policy
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Tim Goodacre - new Chair of the International Steering Committee

I am delighted and honoured to have been invited to take up the Chair of CLEFT International steering committee, having joined the expanded charity as a Trustee some 3 years ago. From the outset, I have been impressed by the generously outward facing nature of CLEFT, reflecting a commitment to widening access across the globe to high quality, locally delivered, fully comprehensive care for those with cleft and related conditions.
Chloé's webinar for the Circle of Cleft Professionals

Chloé Rolland, a cleft specialist orthodontist who is on the CLEFT International Steering Committee is giving a webinar for the Circle of Cleft Professionals this June: 'Cleft Orthodontics: Reducing the Burden of Care'
Sustainable, long-term care matters!

Back in February 2023, the Great Ormond Street team of clinicians visited the Sheik Hasina National Institute of Burns and Plastic Surgery in Bangladesh with Mirror journalist, Nick Sommerlad and photographer, Rowan Griffiths.
The Maliniac Lecture

Mr Brian Sommerlad delivered the Maliniac Lecture at the American Society of Plastic Surgery in October 2022. This fascinating lecture looking at 'Reducing Inequality in Surgery Globally’ gives great insight into the inequalities of cleft care around the world.
New partnership with Face Equality International

At the beginning of January 2023, CLEFT proudly joined the Face Equality International Alliance. This is a group of NGO's, charities and support groups working together to promote the campaign for 'face equality'.
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The 14th International Cleft Congress took place in July 2022 and we were very pleased to support the visit of some of our international colleagues to this important conference.

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We are working with Bangladeshi specialists at the new Sheikh Hasina National Institute of Burns and Plastic Surgery to create a sustainable centre to treat children with cleft lip and palate.
Nawrin and the C-Arm

This important piece of equipment was supplied by CLEFT and is used to see moving images of the cleft palate. Nawrin is a 13 year old girl who was experiencing speech difficulties and needed the C-Arm to show the cleft team if further surgery was required.
Our mission

CLEFT was established in 2007 with one aim, to help improve the lives of children born with cleft lip and palate, either by funding research into the likely causes of the condition or by helping support teams in lower and middle income countries.
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.
About us

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.
The genetics of cleft lip and palate

Investigations into the genetics of cleft lip and palate to understand more about why cleft lip and palate occurs.
Brian Sommerlad, Consultant Plastic Surgeon and Chair of Trustees

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.
Our research vision

At CLEFT, our vision is of a future where clefts are preventable. Until we get there, we want to improve the lives of those born with cleft lip and palate.
Trusts and Foundations

Today, 1-in-700 babies in the UK are born with a cleft lip and palate, the most common form of birth defect. The impact on a child’s life as they grow is profound. Typically, they will need at least four operations. They may also require ongoing tests, treatment or therapy. It will affect the way they look but also their speech, hearing and dental development. It can leave deep psychological scars.
Our philosophy

The two arms of CLEFT are brought together by our mission to bridge the gap in cleft care and knowledge both in the UK and around the world. Our international and research philosophies are at the very heart of our work.