JARDIN Joint Action
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jardinjointaction.bsky.social
JARDIN Joint Action
@jardinjointaction.bsky.social
To improve the accessibility of the ERNs for patients across Europe, the EU has funded a pioneering 3-year project involving all member states (MS) plus Norway and Ukraine, the Joint Action on Integration of ERNs into National Healthcare Systems (‘JARDIN’)
🌐 3rd Multidisciplinary Rare Diseases Conference | Spain

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...
January 30, 2026 at 10:20 AM
📣 Transition in Rare Diseases Workshop

📅 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
January 27, 2026 at 2:12 PM
Reposted by JARDIN Joint Action
POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 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
January 12, 2026 at 9:30 AM
Reposted by JARDIN Joint Action
📣 Upcoming free virtual event | Spanish-language

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...
January 12, 2026 at 12:22 PM
🎉 Happy New Year from #JARDIN!

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! ✨
January 1, 2026 at 4:31 PM
📅🎄 Day 25 of #JARDIN's Advent Calendar

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
December 25, 2025 at 1:31 PM
📅🌟 Day 24 of #JARDIN's Advent Calendar

✨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
December 24, 2025 at 3:31 PM
📅🎆 Day 23 of #JARDIN's Advent Calendar

✨ 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
December 23, 2025 at 8:45 AM
📅🍭 Day 22 of #JARDIN's Advent Calendar

✨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
December 22, 2025 at 2:20 PM
📅☃️ Day 21 of #JARDIN's Advent Calendar

✨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
December 21, 2025 at 5:02 PM
📅🧸 Day 20 of #JARDIN's Advent Calendar

✨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
December 20, 2025 at 11:11 AM
📅❄️ Day 19 of #JARDIN's Advent Calendar

✨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
December 19, 2025 at 1:04 PM
📅🔔 Day 18 of #JARDIN's Advent Calendar

✨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
December 18, 2025 at 12:16 PM
📅🛷 Day 17 of #JARDIN's Advent Calendar

✨ 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
December 17, 2025 at 5:25 PM
📅🦓 Day 16 of #JARDIN's Advent Calendar

✨ 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
December 16, 2025 at 6:02 PM
📅🕯️ Day 15 of #JARDIN's Advent Calendar

✨ 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
December 15, 2025 at 12:12 PM
📅🌷 Day 14 of #JARDIN's Advent Calendar

✨ 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
December 14, 2025 at 12:02 PM
📅🎠 Day 13 of #JARDIN's Advent Calendar

✨ 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
December 13, 2025 at 6:15 PM
📅💗 Day 12 of #JARDIN's Advent Calendar

✨ 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
December 12, 2025 at 8:15 AM
📅⛸️ Day 11 of #JARDIN's Advent Calendar

✨ 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
December 11, 2025 at 6:30 PM
📅🎀 Day #10 of #JARDIN's Advent Calendar

✨ 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
December 10, 2025 at 3:40 PM
📅🦉 Day 9 of #JARDIN's Advent Calendar

✨ 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
December 9, 2025 at 3:16 PM
📅🐧 Day 8 of #JARDIN's Advent Calendar

✨ @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
December 8, 2025 at 9:02 AM
📅❄️ Day 7 of #JARDIN's Advent Calendar

@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
December 7, 2025 at 8:30 AM