Recordati Rare Diseases Foundation

Register⏱️ by 27th July 2025.    A few places remain for this upcoming course on Leukodystrophies: novel perspectives on treatments and disease monitoring. Target audience and participant profile: Child neurologists, neurologists, neuroradiologists, paediatricians, geneticists, internists, neuroscientists. See the full programme here 🔍 https://lnkd.in/dRmSET7a Scientific organising committee. Fanny Mochel - Paris, France, Caroline Sevin - Le Kremlin Bicêtre, France, Nicole Wolf - Amsterdam, The Netherlands #CME Education #RareDiseases #RareDiseaseAwareness #Leukodystrophies #WhiteMatterDisorders #Neuroimaging #Genetherapy 

🎉 We're proud to share our journey so far!     From our first educational session in 2000, to educating over 3,000 healthcare professionals worldwide by 2025, here’s how we’ve been making a difference to the lives of patients and families affected by rare diseases.    Watch the video to discover our contribution to the fight against rare diseases and hear from members of the scientific committee who’ve been a pivotal part of our mission.    Here’s to 25 years so far, and to many more to come!    #25RRDFBirthday #25YearsOfImpact #RareDiseaseEducation #RareDiseaseAwareness 

Final chance to register ⏱️ by 14th April ✍ A few places remain for this upcoming course on liver & liver-kidney transplantation for inherited metabolic disorders. See the full programme here 🔍 https://lnkd.in/ePNkPAUx Scientific organising committee. Roshni Vara, London, UK, Carlo Dionisi-Vici, Rome, Italy, Dino Hadzic, London, UK. #CME #Education #RareDiseases #RareDiseaseAwareness #LiverTransplant #KidneyTransplant #InheritedMetabolicDisorders.

This #WorldRareDiseaseDay, we're not only raising awareness for the 300 million people living with rare diseases worldwide. We're also celebrating a unique milestone... 25 years of advancing education and empowering healthcare professionals around the world to make a difference in the rare disease community. The Recordati Rare Diseases Foundation is proud to support Rare Disease Day, in all its colors and languages. Share your colors today, and every other day, to join us in showing support for #RareDiseaseAwareness, and stay tuned as we celebrate our rare disease education journey from 2000 to 2025! #25RRDFBirthday #RareDiseaseDay #25YearsOfImpact 

#ShareYourColours on the 28th of February. Supporting the Rare Disease Community, like every year, to raise awareness and spreading the word: www.rarediseaseday.org #RareDiseaseDay #RareDiseases #RareDiseaseAwareness EURORDIS-Rare Diseases Europe

Robin Lachmann, the Chair of the Recordati Rare Diseases Foundation's Scientific Committee wraps up the 2024 activities and announces the 2025 agenda. ➡️ ️ For paediatric and adult physicians specialised or interested in inherited metabolic diseases, liver&kidney transplantation in IMD (12-14 June in London), leukodystrophies (25-27 September in Paris) and functioning neuroendocrine tumour syndromes (6-8 November in Genoa). Apply for a place on our courses on www.rrd-foundation.org and share with colleagues that could benefit from this independent medical education. #rarediseases #inheritedmetabolicdisorders #inbornerrorsofmetabolism #rarediseaseawareness #endocrinology

Best wishes for 2025 to all our followers, experts, participants and those who support the Recordati Rare Diseases Foundation and make our mission to fill the educational gap in rare diseases possible. Reminder of our 2025 agenda: 1. Liver & liver-kidney transplantation for inherited metabolic disorders – advanced course (12-14 June) 2. Leukodystrophies: novel perspectives on treatments and disease monitoring (25-27 September) 3. Functioning Neuroendocrine Tumour Syndromes: biochemical, genetic, imaging workup and therapeutic management (6-8 November) 💻 To register your interest, please send an application on www.rrd-foundation.org with a CV. All the scientific programmes and course details will soon be updated for each course, some fine tuning is still ongoing. ℹ️ An application for CME accrediation will be sent for each course, as always. 📣 Don't hesitate to share this information with colleagues and anybody from your network that would benefit from this highly scientific and indedpendent medical education. 👩⚕️ 👨🔬 Scientific organisers: Roshni Vara, Carlo Dionisi-Vici, Dino Hadzic, Fanny Mochel, Nicole Wolf, caroline sevin, Diego Ferone, Wouter de Herder, Vera Popovic-Brkic, John Wass #rarediseases #rarediseaseawareness #inbornerrorsofmetabolism #endocrinology #medicaleducation European Society of Endocrinology Endo-ERN - European Reference Network Endocrine Society ENEA - European Neuroendocrine Association MetabERN ERN-RND, European Reference Network for Rare Neurological Diseases

📅 Announcing our 2025 agenda with 3 courses organised by dedicated and eminent world experts in inherited metabolic/neurometabolic and rare endocrine diseases. Topics are: 1. Liver & liver-kidney transplantation for inherited metabolic disorders – advanced course (12-14 June) 2. Leukodystrophies: novel perspectives on treatments and disease monitoring (25-27 September) 3. Functioning Neuroendocrine Tumour Syndromes: biochemical, genetic, imaging workup and therapeutic management (6-8 November) 💻 To register your interest, please send an application on www.rrd-foundation.org with a CV. -> All the scientific programmes and course details will soon be updated on the website, some fine tuning is still ongoing. ℹ️ An application for CME accrediation will be sent for each course, as always. 📣 Don't hesitate to share this information with colleagues and anybody from your network that would benefit from this highly scientific and indedpendent medical edcation. 👩⚕️ 👨🔬 Scientific organisers: Roshni Vara, Carlo Dionisi-Vici, Dino Hadzic, Fanny Mochel, Nicole Wolf, caroline sevin, Diego Ferone, Wouter de Herder, Vera Popovic-Brkic, John Wass #rarediseases #rarediseaseawareness #inbornerrorsofmetabolism #endocrinology #medicaleducation European Society of Endocrinology Endo-ERN - European Reference Network Endocrine Society ENEA - European Neuroendocrine Association MetabERN ERN-RND, European Reference Network for Rare Neurological Diseases

We would like to take a moment to express our heartfelt thanks to Alastair Kent OBE for his exceptional contributions as a member of the Board of Directors at the Recordati Rare Diseases Foundation over the past seven years. Alastair has been a powerful advocate for bringing the voice of the patient into our work, ensuring that the needs and perspectives of rare disease communities are always at the heart of what we do. His involvement in both the Board and our Scientific Committees has been instrumental in shaping the foundation’s direction and success. In particular, we want to recognise Alastair’s pivotal role in the creation of the innovative Genetic Therapies course in Heidelberg in 2023. This course has been transformative, offering cutting-edge education with impactful debates and discussions, and we are grateful for Alastair’s expertise and dedication in making it possible. As Alastair steps down from the Foundation, we wish him all the very best for the future. His legacy will undoubtedly continue to inspire us for years to come. To hear more from Alastair about his experiences working with the Foundation, please watch the video below, where he shares his reflections on the importance of putting the patient in the centre of our mission. Alastair is also the 2018 EURORDIS-Rare Diseases Europe Lifetime Achievement Awardee. Thank you, Alastair, for everything you've done, and we look forward to seeing what comes next in your journey! #rarediseaseawarness #patientadvocacy #medicaleducation

Live from the "Cell trafficking and complex lipids: an interconnected network of rapidly expanding disorders" course, organised in beautiful Rome by A. Garcia-Cazorla, Carlo Dionisi-Vici, Diego Martinelli, Alfonso Oyarzábal. This first day started off with the basic concepts and the groups of diseases according to pathophysiology with eminent speakers in their field of expertise. The next 2 days will focus more on the clinical manifestations, biomarkers and treatments with several participants' case presentations and discussions for sharing challenging cases and personal experiences. #neurology #neurometabolic #inheritedmetabolicdisease #rarediseases #rarediseaseawarness #medicaleducation