"Patients have to be there at the table to co-decide with the other stakeholders." 🤝

Our take-home message: every time there is a new mechanism or a new governance, patients have to be at the table.

👉 www.hlm4rare.eu

#EHFG2026 #RareDiseases #HLM4Rare

#RareDiseases are "an opportunity for innovation", not a cost. 📊
For the ERNs, cross-border registries are "not a choice", but a methodological requirement: there are not enough patients in one country.
A common ethical framework? "Yes, we need it."

👉 www.hlm4rare.eu

#EHFG2026 #HLM4Rare

"Access starts with a proper diagnosis."

The way forward: faster decisions on what goes into newborn screening panels, more discussion on newborn screening, and a rare disease action plan, key for both diagnosis and other therapies.
👉 hlm4rare.eu

#EHFG2026 #RareDiseases #NewbornScreening #HLM4Rare

"Europe does not lack clinical expertise." 🔬

Holm Graessner's message: we can do this now. We have what we need in place. What we need is trust, and the resources to deliver.

👉 Follow our work: hlm4rare.eu

#EHFG2026 #RareDiseases #ERN #HLM4Rare

"If not now, when?" Maurizio Scarpa's answer: it's now. ⏳

Because a child born in Vilnius, Valencia or Vienna should have the same chance, not one that depends on their postcode.

👉 Follow our work: hlm4rare.eu

#EHFG2026 #RareDiseases #ERN #HLM4Rare

Join BRAINS FOR BRAIN FOUNDATION, #HLM4RARE and EUCOPE for "Unlocking European competitiveness: How the rare disease ecosystem drives health innovation."

📅 Wednesday, 30 September 2026 | 10:30-11:45 | Kursaal

Follow the session live 👉 www.hlm4rare.eu/european-hea...

#RareDiseases #EHFG2026

#HLM4Rare is built around four voices, each bringing a different kind of expertise and urgency to the table:
🔹 Patients and families
🔹 The 24 ERNs
🔹Industry
🔹 Policymakers
They're the ecosystem turning commitments into action for people living with #RareDiseases across Europe.
👉 hlm4rare.eu

#HLM4Rare, led by the #ERNs, envisages a Europe where every person living with or at risk of having a rare and complex disease has access to timely diagnosis, world-class expertise, innovative treatments and high-quality care, regardless of where they live.

👉 Follow our journey: www.hlm4rare.eu

#Rare doesn't mean alone.

#HLM4Rare is a permanent initiative for collective action, transforming Europe's fragmented rare disease landscape into a connected, sustainable and high-performing ecosystem for people living with and at risk of rare diseases.

👉 Follow our journey: www.hlm4rare.eu

Overcoming systemic barriers and implementing ERNs in practice: how can the EU become a world leader in translational health innovation?

Don't miss this importnat #EHFG2026 session on unlocking competitiveness 🔗 bit.ly/4ycL9WA

#HLM4RARE #BrainsForBrainFoundation #Eucope #HealthForAStrongerEU