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#rarediseaseday2024 #craniosynostosis

Fantastic that our trustee Charlotte was invited to speak about her lived experience of #craniosynostosis at this important European scientific meeting 👏

The fourth film in the ACCORD series by Appearance Research Headlines Craniofacial Support Fine Rolling Media stars Zoe, who describes the #employment challenges she’s encountered and what needs to change to support people with #disabilities in the #workplace. headlines.org.uk/for-adults. #Craniofacial

Huge thanks to the wonderful folk at Aldermore Bank for their incredibly generous donation towards our annual Family Weekend - as a very small charity it really will make a big difference! #charitygiving #everylittlehelps

Choc full of inspiring stories, news and information: the latest edition of Headline News, our annual magazine for members, is out now! 🙌 #craniosynostosis #charity

Jenna & Amelia were born with Apert syndrome and first met at AlderHey Children's Hospital when they were toddlers. You can read the heartwarming story of how their special friendship has flourished over the years in the latest edition of Headline News -out now! #craniosynostosis

Our support network for #dads has gone from strength to strength this year, thanks to funding from Pears Foundation: you can read all about the work in the latest edition of our annual magazine Headline News - out now! #craniosynostosis #dadsmattertoo #CranioDads

Last year, our Research Committee made awards of over £50,000 towards research focusing on our Top Ten Priority Research Questions. You can read more about this vital work in the latest issue of our annual magazine, Headline News - out now! #craniosynostosis #researchmatters

V pleased to be joining colleagues from the 5 UK Specialist Craniofacial Units for the 2024 National Audit meeting in Liverpool today - looking forward to hearing about the fantastic work they’ve all been undertaking over the past year and to presenting an update on Headlines 🙌

V interesting session on neurodiversity at the National Audit mtg today. Headlines often gets asked about the link between autism/ADHD & craniosynostosis and altho there are still no conclusive answers, it’s good to know the specialist teams are examining this issue so closely

Great to hear about the work that the NHS Specialist Craniofacial Units are undertaking to improve early diagnosis of #craniosynostosis in the National Audit meeting this morning . It’s vital that every child born with craniosynostosis receives timely diagnosis & treatment 👏👏

Headlines Director, Karen Wilkinson-Bell, opening today’s NHS National Craniofacial Audit meeting in Liverpool with a presentation on the charity’s recent work and a discussion of some exciting new projects for the coming year #craniosynostosismatters 🙌

Super excited to be at Flight Simulator Midlands in Coventry today for our 2nd #CranioDads meet up - we’ve even got seats from Concorde to sit on before the briefing! #craniosynostosis #dadsmattertoo ✈️🛩️

As a dad, John found it hard to tell anyone how he really felt when his son was diagnosed with #Apertsyndrome. You can hear John’s story and how Headlines is helping other dads like John here: video.wixstatic.com/.../5a5def.../…

Headlines trustee Charlotte Ashby joined Dr Nicola Marie Stock and fellow ACCORD contributor and PhD student Sally Smith for the Appearance Research #AM10 conference in Bristol this week to talk about the Headlines/CAR ACCORD project for adults #craniosynostosis

Congratulations to our DPhil student Isaac Walton! Isaac won the Judge’s prize at Oxford-MRC DTP for speedily presenting his research about modelling ZIC1 craniosynostosis in mice - in under 3 minutes ⏱️‼️

Flag spotted at Glastonbury “My dad was a toolmaker”:

Our Director Karen Wilkinson-Bell and trustee Charlotte Ashby are excited to be in Oxford today for the Annual Scientific Meeting of the British Association of Oral & Maxillofacial Surgeons BAOMS - Karen & Charlotte are speaking at a session on ‘Humanising Healthcare’

Please consider taking part in this important new study

Are you aged 16-35 and have (or are a sibling of someone who has) a rare #craniofacial condition? Then come and join us for our first-ever young persons' conference in London on Saturday 21st September. It's completely free. Email [email protected] for further details.