European Reference Network - MetabERN @ernmetabern

European Reference Network - MetabERN

@ernmetabern.bsky.social

The European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN). A better future for Rare Inherited Metabolic Disease patients. Visit us 🔗 https://metab.ern-net.eu/

62 Followers | 59 Following | 1 Posts | Joined: 24.02.2025 | 1.6215

Latest posts by ernmetabern.bsky.social on Bluesky

SANT launches public consultation on rare diseases | News | European Parliament On 28 February, marking the 2025 Rare Disease Day, Parliament’s public health committee kicks off its survey on rare diseases.

#survey: Public consultation on Rare Diseases by the Public Health Committee of the #EuropeanParliament - directly related to the work of #ERNs, so take some time and fill it in! t1p.de/3ieqb

@erneurogen.bsky.social @erknet.bsky.social @vascern.bsky.social @ernmetabern.bsky.social

05.03.2025 09:13 — 👍 5 🔁 2 💬 1 📌 0

Illustration of a healthcare professional in a white coat using a stethoscope to check a patient’s blood pressure. The patient, wearing a pink shirt, extends their arm for the procedure. The background contains abstract medical cross symbols. The text reads: 'RARE PATIENTS. RARE EXPERTS. REAL OUTCOMES.' Below, additional text states: 'Rare Disease Day 2025, February 28.' Logos for the European Reference Networks and the European Union are present, indicating funding and support.

🚨 When the right doctor is in another country, how do rare disease patients get care?

European Reference Networks (ERNs) are virtual networks connecting experts across the EU, ensuring patients get the right treatment no matter where they live.

Learn more ➡️ bit.ly/3D5yYE0
#RareDiseaseDay

24.02.2025 11:34 — 👍 14 🔁 7 💬 0 📌 0

🌍 Today is #RareDiseaseDay 2025!

We stand with the 300 million people worldwide living with rare diseases.
By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future!

🔗 Read more: metab.ern-net.eu/rare-disease...

#RareDiseaseDay2025

28.02.2025 07:51 — 👍 15 🔁 3 💬 0 📌 0

Fancy a chat? Get ready for this terrific set of “Dialogues on Neurometabolim”, chaired by the fabulous A. Garcia-Cazorla and supported by MetabERN.

1st webinar: 10th March 2025 at 17.00 CET.

Register here: us06web.zoom.us/webinar/regi... or using the QR code on the image below.

23.02.2025 18:24 — 👍 2 🔁 1 💬 0 📌 0

@ernmetabern is following 20 prominent accounts

ERN EURO-NMD
@euronmd

European Reference Network for Rare Neuromuscular Diseases

European Paediatric Neurology Society (EPNS)
@epnsnews

Education, Promotion, Networking, Science The EPNS is a non profit making independent Society for physicians, trainees/residents, PhD students, health professionals, scientists and students with a research or clinical interest in Child Neurology.

ERN EuroBloodNet
@erneurobloodnet

ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.

Hospital Sant Joan de Déu Barcelona
@sjdhospitalbarcelona.org

L'Hospital Sant Joan de Déu Barcelona és un centre d'alta especialització en el tractament d'infants i dones embarassades. El Hospital Sant Joan de Déu Barcelona es un centro de alta especialización en el tratamiento de niños y mujeres embarazadas.

Alan Finglas
@alanfinglas

Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.

ERN-RND
@ern-rnd

European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://www.ern-rnd.eu/education-training/online-medical-education-for-rare-neurological-diseases/

Teamit
@teamitresearch

Research management organisation - Empowering collaborative research and innovation for a healthier future. 🔗 https://teamitresearch.com/

RealiseD
@realised-ihi

Transforming Clinical Trials for Ultra-Rare Diseases. 🔗 https://realised-ihi.eu/

Cell Metabolism
@cp-cellmetabolism

A Cell Press journal publishing cutting-edge research in metabolism biology, from molecular/cellular biology to translational and clinical studies.

ERKNet - European Reference Network for Rare Kidney Diseases
@erknet

ERKNet is devoted to improving the lives of patients with rare kidney diseases. https://www.erknet.org

Rare Disease Clinical Trial Network
@rarediseasectn

HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.

Rare Diseases International (RDI)
@rarediseasesint

RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.

European Commission
@ec.europa.eu

News and information from the European Commission. Social media and data protection policy: http://europa.eu/!MnfFmT

@globalgenes

ERN eUROGEN
@erneurogen

The European Reference Network for Rare Urogenital Diseases and Complex Conditions - https://eurogen-ern.eu/

VASCERN | European Reference Network
@vascern

Advancing the diagnosis, treatment, and care of patients with rare multisystemic vascular diseases across Europe. 🔬 Evidence-based guidelines | 🌍 Cross-border collaboration | 📚 Education 📌 Visit us: www.vascern.eu

EURORDIS-Rare Diseases Europe
@eurordis

An alliance of non-profit organisations working across borders and diseases to improve the lives of all people living with rare diseases.

European Public Health Alliance
@epha-eu

The European Public Health Alliance is a change agent – Europe’s leading NGO alliance advocating for better health. Reposts are not endorsements. #PublicHealth

CDC (mirror)
@cdcgov.govmirrors.com

Mirrors posts from the CDCGov twitter account. No affiliation with government. GovMirrors starter pack here: go.bsky.app/6hGESnZ

European Patients Forum (EPF)
@eupatientsforum

We are the leading voice of patient organisations in Europe.