📺 youtu.be/NK8dsUHF_dU
📰 tinyurl.com/ERNeUROGENne...
#EUfunded #EU4Health #RareDisease #ERNs #UroOnc #EUCancerPlan #EUCancerMission #UroSoMe @ec.europa.eu @jardinjointaction.bsky.social
📺 youtu.be/NK8dsUHF_dU
📰 tinyurl.com/ERNeUROGENne...
#EUfunded #EU4Health #RareDisease #ERNs #UroOnc #EUCancerPlan #EUCancerMission #UroSoMe @ec.europa.eu @jardinjointaction.bsky.social
Experts, clinicians & patient reps will discuss rare disease care, AI, gene therapy, case studies & patient-centred approaches to improve integrated care
📅 25 Feb 2026
🏥 H.U. La Paz Madrid
👥 In-person & Zoom
🖱️ jardin-ern.eu/event/3rd-mu...
Experts, clinicians & patient reps will discuss rare disease care, AI, gene therapy, case studies & patient-centred approaches to improve integrated care
📅 25 Feb 2026
🏥 H.U. La Paz Madrid
👥 In-person & Zoom
🖱️ jardin-ern.eu/event/3rd-mu...
📅 27–28 February 2026
📍 Ghent, Belgium
A two-day meeting dedicated to improving continuity of care from paediatric to adult services for people living with #RareDiseases.
More info: jardin-ern.eu/event/transi...
#RareDiseaseDay #EU4Health #ERNs
📅 27–28 February 2026
📍 Ghent, Belgium
A two-day meeting dedicated to improving continuity of care from paediatric to adult services for people living with #RareDiseases.
More info: jardin-ern.eu/event/transi...
#RareDiseaseDay #EU4Health #ERNs
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP
Sign up 👉https://t1p.de/5nef2
Joint with the @euronmd.bsky.social and @ean.org
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP
Sign up 👉https://t1p.de/5nef2
Joint with the @euronmd.bsky.social and @ean.org
The Marfan Foundation will host its 5th Spanish-Language Summit
📅 Saturday, 24 January 2026
⏰ 16:00–18:30 (CET)
💻 Online
🌍 Sessions are 100% in Spanish
with experts from Europe, Latin America & the US.
Register here: vascern.eu/events/marfa...
The Marfan Foundation will host its 5th Spanish-Language Summit
📅 Saturday, 24 January 2026
⏰ 16:00–18:30 (CET)
💻 Online
🌍 Sessions are 100% in Spanish
with experts from Europe, Latin America & the US.
Register here: vascern.eu/events/marfa...
Two years of Europe-wide collaboration, working towards improvements for people with #RareDiseases or complex conditions. In 2026, we’ll keep strengthening cooperation to benefit patients and health systems.
Wishing you a peaceful, healthy, and hopeful year ahead! ✨
Two years of Europe-wide collaboration, working towards improvements for people with #RareDiseases or complex conditions. In 2026, we’ll keep strengthening cooperation to benefit patients and health systems.
Wishing you a peaceful, healthy, and hopeful year ahead! ✨
And that’s a wrap! Over the past weeks, we’ve spotlighted the 24 ERNs that connect medical expertise across Europe with people living with rare diseases and complex conditions, to make the patient journey more accessible and supportive.
🔗https://jardin-ern.eu
And that’s a wrap! Over the past weeks, we’ve spotlighted the 24 ERNs that connect medical expertise across Europe with people living with rare diseases and complex conditions, to make the patient journey more accessible and supportive.
🔗https://jardin-ern.eu
✨VASCERN is the ERN for rare multisystemic vascular diseases. It brings together expert teams from 19 European countries and works with 33 patient advocates to improve diagnosis, promote care, support patients and clinicians across Europe.
🔗https://vascern.eu
✨VASCERN is the ERN for rare multisystemic vascular diseases. It brings together expert teams from 19 European countries and works with 33 patient advocates to improve diagnosis, promote care, support patients and clinicians across Europe.
🔗https://vascern.eu
✨ MetabERN supports people affected by rare inherited metabolic diseases (IMDs). Driven by collaboration between patients and experts, it works to capture innovative advances and translate them into care tailored to patients’ needs.
🔗 https://metab.ern-net.eu
✨ MetabERN supports people affected by rare inherited metabolic diseases (IMDs). Driven by collaboration between patients and experts, it works to capture innovative advances and translate them into care tailored to patients’ needs.
🔗 https://metab.ern-net.eu
✨ERN-RND supports people living with rare neurological diseases. It connects 64 centres and partners in 24 countries, and addresses the needs of over 500,000 patients in EU by improving diagnosis, care and coordination across all ages.
🔗https://www.ern-rnd.eu
✨ERN-RND supports people living with rare neurological diseases. It connects 64 centres and partners in 24 countries, and addresses the needs of over 500,000 patients in EU by improving diagnosis, care and coordination across all ages.
🔗https://www.ern-rnd.eu
✨ERNICA is the ERN for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. It brings together expertise to support patients with these conditions and improve outcomes beyond what a single country can achieve.
🔗https://www.ern-ernica.eu
✨ERNICA is the ERN for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. It brings together expertise to support patients with these conditions and improve outcomes beyond what a single country can achieve.
🔗https://www.ern-ernica.eu
✨TransplantChild is the ERN on paediatric transplantation, covering all solid organ and stem cell transplants. It focuses on immunosuppression, vaccines, infections, & transition, improving long-term care for patients and families.
🔗https://transplantchild.eu
✨TransplantChild is the ERN on paediatric transplantation, covering all solid organ and stem cell transplants. It focuses on immunosuppression, vaccines, infections, & transition, improving long-term care for patients and families.
🔗https://transplantchild.eu
✨ERN Skin is the ERN for rare, complex and undiagnosed skin disorders in children and adults. It provides highly specialised care and supports daily management while enabling patients to remain in their home environment whenever possible.
🔗https://ern-skin.eu
✨ERN Skin is the ERN for rare, complex and undiagnosed skin disorders in children and adults. It provides highly specialised care and supports daily management while enabling patients to remain in their home environment whenever possible.
🔗https://ern-skin.eu
✨RITA is the ERN for rare immunological disorders. It brings together experts to improve diagnosis, provide guidelines, and ensure access to therapies like biologics, immunoglobulin replacement, stem cell & gene therapy for all patients.
🔗https://ern-rita.org
✨RITA is the ERN for rare immunological disorders. It brings together experts to improve diagnosis, provide guidelines, and ensure access to therapies like biologics, immunoglobulin replacement, stem cell & gene therapy for all patients.
🔗https://ern-rita.org
✨ ERN ReCONNET is the ERN for Connective Tissue and Musculoskeletal Diseases. It involves a total of 65 Healthcare Providers: 54 Full Members (FMs) and 9 Affiliated Partners (APs) from over 23 EU countries.
🔗 https://reconnet.ern-net.eu
✨ ERN ReCONNET is the ERN for Connective Tissue and Musculoskeletal Diseases. It involves a total of 65 Healthcare Providers: 54 Full Members (FMs) and 9 Affiliated Partners (APs) from over 23 EU countries.
🔗 https://reconnet.ern-net.eu
✨ ERN RARE-LIVER is the ERN for hepatological diseases, uniting expert centres to improve care for adults and children. It focuses on autoimmune, vascular, biliary and structural liver diseases and develops clinical practice guidelines.
🔗https://rare-liver.eu
✨ ERN RARE-LIVER is the ERN for hepatological diseases, uniting expert centres to improve care for adults and children. It focuses on autoimmune, vascular, biliary and structural liver diseases and develops clinical practice guidelines.
🔗https://rare-liver.eu
✨ ERN PaedCan is the ERN on Paediatric Cancer working to reduce inequalities in childhood cancer survival by providing high-quality, accessible cross-border healthcare for children and adolescents across Europe.
🔗 https://paedcan.ern-net.eu
✨ ERN PaedCan is the ERN on Paediatric Cancer working to reduce inequalities in childhood cancer survival by providing high-quality, accessible cross-border healthcare for children and adolescents across Europe.
🔗 https://paedcan.ern-net.eu
✨ ERN-LUNG is the ERN for rare respiratory diseases. It brings together expert centres and patient organisations across Europe to reduce mortality, improve care, support research, and strengthen education and knowledge-sharing.
🔗 https://ern-lung.eu
✨ ERN-LUNG is the ERN for rare respiratory diseases. It brings together expert centres and patient organisations across Europe to reduce mortality, improve care, support research, and strengthen education and knowledge-sharing.
🔗 https://ern-lung.eu
✨ ITHACA is the ERN for rare malformative conditions, intellectual disabilities and neurodevelopmental disorders. With 70 centres and 47 EPAGs, it shares expertise to improve care, advance research, and enhance access to information.
🔗 https://ern-ithaca.eu
✨ ITHACA is the ERN for rare malformative conditions, intellectual disabilities and neurodevelopmental disorders. With 70 centres and 47 EPAGs, it shares expertise to improve care, advance research, and enhance access to information.
🔗 https://ern-ithaca.eu
✨ ERN GUARD-Heart is the ERN for rare heart diseases, with a focus on genetically transmitted and specialised paediatric procedures. It brings together 43 expert centres in 16 MS to improve diagnosis, treatment and patient care.
🔗https://guardheart.ern-net.eu
✨ ERN GUARD-Heart is the ERN for rare heart diseases, with a focus on genetically transmitted and specialised paediatric procedures. It brings together 43 expert centres in 16 MS to improve diagnosis, treatment and patient care.
🔗https://guardheart.ern-net.eu
✨ ERN GENTURIS is the ERN for rare and/or complex genetic tumour risk syndromes (genturis). It works to improve identification, minimise variation in clinical outcomes, develop EU-guidelines, support research, and empower patients.
🔗 https://www.genturis.eu
✨ ERN GENTURIS is the ERN for rare and/or complex genetic tumour risk syndromes (genturis). It works to improve identification, minimise variation in clinical outcomes, develop EU-guidelines, support research, and empower patients.
🔗 https://www.genturis.eu
✨ ERN EURO-NMD is the ERN for rare neuromuscular diseases (NMDs), uniting 82 of Europe’s leading NMD clinical and research centres in 25 Member States and working closely with highly active patient organisations.
🔗 https://ern-euro-nmd.eu
✨ ERN EURO-NMD is the ERN for rare neuromuscular diseases (NMDs), uniting 82 of Europe’s leading NMD clinical and research centres in 25 Member States and working closely with highly active patient organisations.
🔗 https://ern-euro-nmd.eu
✨ ERN-EYE is the ERN dedicated to rare eye diseases. It covers 24 EU countries, brings together 51 full members, 8 affiliated partners and 11 ePAGs to provide the best possible care and expertise for more than 900 rare eye conditions.
🔗 https://www.ern-eye.eu
✨ ERN-EYE is the ERN dedicated to rare eye diseases. It covers 24 EU countries, brings together 51 full members, 8 affiliated partners and 11 ePAGs to provide the best possible care and expertise for more than 900 rare eye conditions.
🔗 https://www.ern-eye.eu
✨ @erneurogen.bsky.social is the ERN for rare uro-recto-genital diseases and complex conditions. It unites experts to improve diagnosis, treatment and outcomes, drive innovation, and ensure equitable access for patients across Europe.
🔗 https://eurogen-ern.eu
✨ @erneurogen.bsky.social is the ERN for rare uro-recto-genital diseases and complex conditions. It unites experts to improve diagnosis, treatment and outcomes, drive innovation, and ensure equitable access for patients across Europe.
🔗 https://eurogen-ern.eu
✨@erneurobloodnet.bsky.social improves care for rare and complex hematological diseases across Europe. It covers 450+ rare hematological disorders, uniting 90 members across 18 Member States, 7 affiliated partners in 6 MS and 11 ePAGs.
🔗https://eurobloodnet.eu
✨@erneurobloodnet.bsky.social improves care for rare and complex hematological diseases across Europe. It covers 450+ rare hematological disorders, uniting 90 members across 18 Member States, 7 affiliated partners in 6 MS and 11 ePAGs.
🔗https://eurobloodnet.eu