The 14th ACAR conference ended yesterday.

The conference brought together patients, families, healthcare professionals and researchers for sharing knowledge and experiences on multiple #ostechondromas , Ollier disease and Maffucci syndrome.

#acaraps #ernbond

Webinar: Patient Involvement in Guidelines - organized by @EURORDIS and @ERKNet

📌April 22, 2024 at 17:30 - 18:15 CEST
Chair: Mark Turner / Speaker: matt johnson

Register here: register.gotowebinar.com/regi.../442971…

Survey for HCPs on the use of artificial intelligence in the diagnostic process of rare bone diseases

⏳ Deadline: 30th April 2024
🔗 bit.ly/4cNEBUn
⏰ The survey will take around 15 minutes.

🧐 Learn more about our research: link.springer.com/article/10.100…

14th ACAR Aps Conference: Transversal collaboration to support research and improve the quality of life of patients with rare genetic diseases.

⏰ 12-14 April 2024, Bologna (Italy)

Dr. Luca Sangiorgi and Liana la Forgia included in the programme 👉🏻 bit.ly/3VVDpIu

𝗪𝗲𝗯𝗶𝗻𝗮𝗿: 𝗰4𝗰 𝗧𝗿𝗶𝗮𝗹𝘀 𝗮𝗻𝗱 𝗘𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻/𝗧𝗲𝗮𝗰𝗵𝗶𝗻𝗴

ERICA in collaboration with conect4children, EJP RD - European Joint Programme on Rare Diseases and ERN BOND

📍 April 11, 2024 - 13:00 - 14:00 CEST
🗣Francesca Rocchi, Chloe Brennan and Becca Leary

bit.ly/4at3i73

𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝘄𝗼𝗿𝗸𝘀𝗵𝗼𝗽: 𝗖𝗿𝗼𝘀𝘀-𝗯𝗼𝗿𝗱𝗲𝗿 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲: 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀' 𝗿𝗶𝗴𝗵𝘁𝘀 𝗮𝗻𝗱 𝗰𝗼𝗼𝗽𝗲𝗿𝗮𝘁𝗶𝗼𝗻 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗘𝗨 𝗠𝗲𝗺𝗯𝗲𝗿 𝗦𝘁𝗮𝘁𝗲𝘀

⏰11 April 2024
📍 Rome (Italy)
🔗 bit.ly/4aSdiXj

📣ADhoc - An immersive Serious Game to raise awareness among healthcare professionals about the diagnosis of rare diseases - NOW AVAILABLE ‼️

Link to play : prod09.almedia.fr/erneye/

#ShareCareCure #RareDiseases Filière de santé maladies rares SENSGENE

#JARDIN KoM closed the 2nd day of the technical meeting with a lively interactive session and final remarks by Prof Till Voigtländer from MedUni Wien EU Health - #HealthUnion HaDEA Thanks to all JARDIN’s partners #EU_MS + #Norway #ERNs #Eurordis #Orphanet #EU4Health

2nd day of #JARDIN KoM: important action points were discussed on the integration of #ERNs into National Healthcare Systems EU Health - #HealthUnion HaDEA European Economic and Social Committee

The conference will conclude the 3 day Joint Action #JARDIN kick-off meeting on the integration of #ERNs into National Health Systems: raise the awareness of the Joint Action and #rarediseases .

💻bit.ly/4a0EmDo
📄bit.ly/4c0Xu5O
🔎bit.ly/49GWm5Y

Up to 36M people in the EU live with a rare disease.
The European Reference Networks #ERNs offer patients with rare diseases better access to diagnosis and treatment.
On #RareDiseaseDay , read our interview with their coordinator to learn more: hadea.ec.europa.eu/news/rare-dise…

It's #RareDiseaseDay ! 🟣🟢🔵

#ERNBOND actively engages in Rare Disease Day, showcasing commitment and energy towards enhancing awareness and support for those affected by rare diseases.

#ERNeu #rarediseaseday2024 #RareDiseaseDay Rare Disease Day

🚏 Inaugurate 2 delle 45 pensiline a #Bologna che sostengono la Giornata delle Malattie Rare! Tra poco nel Palazzo del Comune di Bologna la conferenza stampa in cui presenteremo la nostra campagna e faremo il punto sulla presa in carico delle persone con #malattiarara in Regione Emilia-Romagna.

Kicked off 2024 with a powerful seminar on bone dysplasias in the Azores, organized by @ANDOPortugal. Members and ePAGs came together to expand knowledge on skeletal dysplasias & ERN BOND activities. Special thanks to André Travessa for presenting ERN BOND. #ERNBOND #BoneHealth

🌞✈️👩‍💼 Hola from Bilbao!

👥💡 In this meeting, #ERNs project #managers and #coordinators exchange ideas and discuss ongoing #projects !

As the saying goes: 'Coming together is the beginning, staying together is progress and working together is #success .' 💪

EU conference 'Rare diseases and ERNs' ripresenting European Reference Network on Rare Bone Diseases

Next #webinar on #TIO Tumor-induced osteomalacia
Presented by Prof Suzanne Jan de Beur Suzanne Jan de Beur, MD
Hosted by Dr Jessica Pepe
19 October 2023 16.00-17.00hrs CET @AcademyECTS Hypophosphatemia Q&A @ERN_BOND
buff.ly/450tCBL

📢 Open letter to the #EU institutions and our #NationalGovernments to stand by the European Reference Networks: ERN ReCONNET 🇪🇺 stands by the other 23 #ERNs n EURORDIS-Rare Diseases Europe 💪 #StrongerTogether
👉 bit.ly/48IbVtI

📢Today we had the chance to meet Donata Meroni and Giulio Gallo from EU Health - #HealthUnion🇪🇺⚕️
We spoke about the need of active health networks in Europe addressing rare diseases, European Reference Network on Rare Bone Diseases & innovative ways of improving the quality of life of ppol with Skeletal Dysplasias.
Thank you!

Combination of osteogenesis imperfecta & #hypophosphatasia in three children with multiple fractures, low #bone mass and severe osteomalacia, a challenge for therapeutic management
OIFE Rare Bone Disease Alliance European Reference Network on Rare Bone Diseases Agnes Linglart Soft Bones HPP ECTS_Science
sciencedirect.com/science/articl…