European Eosinophilic Oesophagitis Day Today we celebrate European Eosinophilic Oesophagitis Day, dedicated to raising awareness and visibility of dysphagia for our patient community. Eosinophilic diseases are associated with excessive numbers of a certain type of pro-inflammatory white blood cell called Eosinophils. Eosinophilic Oesophagitis (EoE) is the most common eosinophilic gut disorders occurring in approximately 1 in 1500 people and remaining hard to diagnose and treat. I didn’t know what it was. I was speaking to doctors and we couldn’t get to the bottom of it. At the end of March, EOS Network visited the annual meeting of ERNICA (The European Reference Network for Rare Inherited and Congenital Anomalies) in Madrid as the newly appointed eosinophilic oesophagitis representative. Patients' Representatives on ERNICA, March 2023. Amanda Cordell is the third from the left. ERNICA's holistic approach to patient care considers the physical, emotional, social, economic, and spiritual needs of patients and their families, adapting to their evolving needs throughout their lives. As an organisation that works hard to bring the holistic care approach for all people with eosinophilic diseases, we look forward to productive collaborations and hope resources will become readily available soon. Spain recently joined other European countries in achieving an important milestone in patient care, recommending approval for Jorveza, - a medicine used to treat adults with eosinophilic oesophagitis. But access to treatment remains a challenge across Europe as the decision to provide this treatment long-term is left to local authorities, leading to ongoing unpredictability in the patient's journey. This year we started a new project, Eosinophilic Voices, dedicated to patients' journeys and insights the community can give to improve their quality of life. The impact you've had was amazing. My journey started when we looked into my files with you guys. You helped me get the information that I needed to take to my doctors and say: look there's the medication's out there, like Jorveza.And within two weeks of having my gastroscopy and seeing my consultant I was given Jorveza and that's all done thanks to EOS Network. We are excited to share some remarkable initiatives from our European partners that aim to achieve more patient visibility. AEDESEO (Spanish Association of Eosinophilic Esophagitis) is initiating a campaign called "Illuminate Your City Ror EoE". It involves lighting up iconic buildings and infrastructures in European capitals and cities with pink lights during the week leading up to May 22nd. The goal is to share these illuminations on social media and the European EoE Day website. Everyone is encouraged to participate in these activities and initiatives. Whether attending a seminar, participating in a raffle, or simply sharing a post on social media, every action contributes to our collective effort to shed light on EoE. ESEO (Italy) holds a whole week full of events. On Saturday, 20 May, from 16 pm, in Bracciano (Rome), ESEO hosts a high scientific-institutional profile conference involving patients, doctors, researchers and other stakeholders. The awareness campaign of the Week follows with the main centres of expertise in the national territory, each of their strategic clinics will post posters, wear promotional pins on the gown and offer free consultations to patients who have symptoms attributable to a suspected diagnosis. The association will sort requests in the centres closest to patients. At the same time, there will be a multi-channel activity on social networks that will try to involve testimonials and reach as many people as possible. In addition, ESOE initiates a traditional year challenge, which is focusing on nutrition and is called the "Sixfoodfree Challenge". Learn more about EoE Link to UK EoE guidelines Share your Eosinophilic voice Donate Support EOS Network Charity As a charity with a global reach, we are proud to work with many other Eosinophilic advocates, as we believe the collaboration will build a brighter future for us all. Please find below the website links to Eosinophilic patient organisations offering either national or local support around the world. USA CURED Campaign Urging Research Into Eosinophilic Diseases Eosinophilic Family Coalition APFED American Partnership for Eosinophilic Disorders Australia AusEE Inc Spain Aedeseo Italy ESEO ITALIA Switzerland Swiss Association of Eosinophilic Oesophagitis France APIMEO Association | LinkedIn If you represent an eosinophilic organisation, we would love to hear from you: click here to contact us Manage Cookie Preferences