Awareness month

Cleft and Craniofacial Awareness and Prevention Month is an opportunity to spotlight the people improving care across Europe. Today, we introduce Wanda Lattanzi, one of ERN CRANIO’s expert clinical geneticists. Wanda is a medical geneticists at the Policlinico Gemelli University Hospital in Italy. “As a medical geneticist, I mainly care for people with craniosynostosis and their families, working within a multidisciplinary paediatric neurosurgery team. I provide genetic couns

As part of Cleft and Craniofacial Awareness and Prevention Month, we are delighted to introduce Roman Khonsari, one of ERN CRANIO’s dedicated clinicians, whose expertise and commitment help improve the care and quality of life of patients with cleft and craniofacial conditions across Europe. “I am a craniofacial surgeon working in a specialized pediatric university hospital. I also lead a research team on head and neck malformation and teach at the medical faculty. Roman’s in

This Cleft and Craniofacial Awareness and Prevention Month, get to know Marc Mureau, an ERN CRANIO clinician whose work contributes to advancing multidisciplinary care for children with (congenital) facial palsy. “I am a plastic surgeon since 2005 specializing in reconstructive microsurgery, which is important for the treatment of children with (congenital) facial palsy, because most reconstructive techniques involve microsurgery to be able to perform a dynamic smile reanimat

During Cleft and Craniofacial Awareness and Prevention Month, we are highlighting the experts behind patient care. Meet Katerina Papadopoulou one of ERN CRANIO’s clinicians. “My name is Katerina Papadopoulou, I'm a psychologist with the cleft and craniofacial team at Children's Health Ireland in Dublin. I support children, young people and their families through surgeries, difficult decisions, social relationships and building confidence, helping them navigate challenges at

As part of Cleft and Craniofacial Awareness and Prevention Month, we are pleased to introduce one of ERN CRANIO’s clinicians Frederic Acke: I am Frederic Acke, an ear-nose-throat (ENT) surgeon specialized in ear and hearing disorders. I am involved in ERN CRANIO through our center’s expertise in genetic hearing loss. My interest in this field originated during my PhD research on Stickler syndrome, a genetic condition characterized by features including cleft palate and hearin

Patient association in the spotlight: Pierre Robin Europe. Philippe Pakter represents people with the Pierre Robin Sequence within the ERN CRANIO network. Pierre Robin Europe is a not-for-profit international organization of patients and clinicians that provides support and counseling for patients suffering from the rare disease, Pierre Robin Sequence / Pierre Robin Syndrome. They collaborate with local Pierre Robin Sequence patient groups and clinicians around the world and

Patient association in the spotlight: Headlines UK. Headlines is the leading UK charity supporting people with craniosynostosis and other rare craniofacial conditions. “Our vision is for a world where the physical, psychological and social impacts of craniosynostosis and rare craniofacial conditions are no more.” Find out more about Headlines UK: Headlines Craniofacial Support | Charity | United Kingdom

This month we are highlighting the people behind our network. Meet Virginie, one of ERN CRANIO’s patient representatives. Virginie represent les P’tits Courageux in ERN CRANIO. “When Théo was born, there wasn’t much information related to his rare disease, Crouzon, so with other parents in France, we decided to create a patient association. With this association, we have been able to help other families better live with a craniosynostosis such as Crouzon, Apert, and Pfeiffer.

Today we are introducing another patient representative of ERN CRANIO for the Cleft and Craniofacial awareness and prevention month. Meet Vincent Bouldoires, one of ERN CRANIO's patient representatives and a member of ALPC. “My name is Vincent Bouldoires, and I am honoured to join ERN CRANIO as the new representative of ALPC (Association nationale pour la promotion et le développement de la Langue française Parlée Complétée), the French association promoting Cued Speech (LfPC

As part of our awareness campaign, we are proud to introduce AICRA, a patient association dedicated to supporting individuals and families affected by craniosynostosis. Today, AICRA's President will introduce herself to the ERN CRANIO community and share more about the association's work and mission. My name is Valeria Cambiaghi, and I represent AICRA, the Italian Craniosynostosis Association. We support children living with craniosynostosis, as well as their families, by pro

During Cleft and craniofacial awareness and prevention month, we are introducing the patient representatives. Today, meet Ivana Marinac Ivana is a patient representative within ERN CRANIO, representing the organization Rare Diseases Croatia. Why Patient Representation Matters to Me For me, being a patient representative means making sure that what is not seen in a photograph is still heard at the table. In ERN CRANIO, patient voice means reminding us that care should not be s

🤩 As part of Cleft and Craniofacial Awareness and Prevention Month, we would like to introduce you to Olga Kudamanova, one of the ERN CRANIO patient representatives. 🤩 “My name is Olga and I represent ECO European Cleft Organisation Cleft lip and palate is a congenital condition when the sides of the roof of the mouth and /or lip do not fuse together as they should during pregnancy. While the condition can be treated successfully, it requires comprehensive approach with ma

👏 This month is Cleft and craniofacial awareness and prevention month. This week we would like to introduce you to our patient representatives within ERN CRANIO. Today we would like you to meet Katiuska Rosas. 👏 Dr. Katiuska Rosas is the APERTCRAS Asociación Nacional del Síndrome de Apert y otras Craneosinostosis Sindrómicas patient representative within the ERN CRANIO network, where she represents the perspectives and needs of individuals and families affected by cranios

✨Throughout this month, we are introducing our patient representatives. Today, we are pleased to introduce Jana from ALA.✨ “My name is Jana Angelova, Chair of the Board of the ALA Association. For more than 20 years, I have advocated for cleft patients in Bulgaria. Unfortunately, the state healthcare system still suffers from major deficiencies. It does not support a multidisciplinary approach, lacks funding for speech and orthodontic therapies, and omits early care for infan

As part of Cleft and Craniofacial Awareness and Prevention Month, we are shining a spotlight on our patient representatives. Today we would like to introduce Mariët Faasse. My name is Mariët Faasse, and within ERN CRANIO I represent LAPOSA, the Dutch National Patient and Parent Association for rare congenital craniofacial conditions. Our community includes people with conditions such as (no n-)syndromic craniosynostosis, craniofacial microsomia, and Treacher Collins syndrome.

👏 July is Cleft and Craniofacial Awareness and Prevention Month 👏 As part of this month, we are highlighting the Ear, Nose and Throat (ENT) disease group within ERN CRANIO. This group focuses on a wide range of rare congenital conditions affecting the ears, nose, throat, airway, and swallowing function. These conditions can have a significant impact on breathing, hearing, feeding, speech, and overall quality of life. By bringing together patient representatives, and healthc

👏 July is Cleft and Craniofacial Awareness and Prevention Month 👏 Orodental anomalies are a feature of more than 900 rare diseases and syndromes? These anomalies often occur alongside malformations in other organs or body systems. This is because many of the same genes and signalling pathways are involved in the development of the oral cavity, teeth, and other organs throughout the body. Through ERN CRANIO, experts from across Europe collaborate to improve diagnosis, treatm

👏 July is Cleft and Craniofacial Awareness and Prevention Month. 👏 🧬 22q11 Deletion Syndrome is a rare congenital condition caused by the deletion of a small segment of DNA on chromosome 22, which can affect the heart, palate, facial structures, and development. Through ERN CRANIO, experts across Europe work together to improve care for patients and families living with rare diseases Find more information on our website: https://lnkd.in/eHzz6Egm

✨ July is Cleft and Craniofacial Awareness and Prevention Month! 🧩This month, we shine a spotlight on the conditions represented in ERN CRANIO. Did you know the craniofacial anomalies disease group within ERN CRANIO covers a diverse range of conditions These include: 🔹 Aplasia cutis congenita 🔹 Craniofacial clefts 🔹 Craniofacial microsomia (CFM) 🔹 Encephaloceles 🔹 Facial dysostosis 🔹 Microtia 🔹 Neurofibromatosis 🔹 Cleidocranial dysostosis 🔹 Tongue anomalies 🔹 Fibr

✨ July is Cleft and Craniofacial Awareness and Prevention Month! ✨ This month, we’re highlighting the rare conditions within ERN CRANIO. Today, we turn the spotlight on cleft lip and/or palate. Cleft lip and palate is a congenital condition when the sides of the roof of the mouth and /or lip do not fuse together as they should during pregnancy. While the condition can be treated successfully, it requires comprehensive approach with many different specialists (surgeons, nurs