European Conference on Rare Diseases 2026 Prague, Czechia

Overview

The European Conference on Rare Diseases (ECRD) 2026, organized by EURORDIS-Rare Diseases Europe, is the largest patient-led event shaping policies for rare diseases, scheduled for June 2–4, 2026, in Prague, Czechia, under the theme “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases.” This pivotal conference, co-organized with Rare Diseases Czech Republic and supported by partners like MedTech Europe and EUCOPE, unites over 700 stakeholders—including patient advocates, policymakers, clinicians, industry representatives, regulators, and Member State officials—to assess progress five years post-Rare2030 and midway to the 2028 WHO Global Plan targets. Amid the EU’s Life Science Strategy and upcoming Biotech Act, ECRD 2026 launches a community-led initiative to co-develop an EU Action Plan or Strategic Framework for Rare Diseases, defining scope, objectives, governance, and a stakeholder-based Steering Group with a drafting roadmap for accountability and cross-sector co-ownership.

The event features thematic tracks on therapies/development/access, diagnosis/research/prevention, social sciences/holistic care, specialized healthcare, and health technology assessments (HTA), with sessions aligned to Rare Disease International’s taskforces for global coherence. Attendees will engage in over 100 expert speaker presentations, policy-shaping discussions, and networking, drawing from the Rare2030 Foresight Study to address inequalities and boost Europe’s biotech competitiveness. With closed captioning in 12 languages (e.g., Spanish, French, German) and sustainability efforts reducing carbon footprints via transport, catering, and paper usage, ECRD 2026 ensures inclusivity and environmental responsibility. Held in Prague, a central European hub, it harnesses EURORDIS’s network to influence EU and national policies, reinforcing rare disease research’s role in precision medicine and advocating for the 300 million people worldwide affected by rare conditions.

Event Highlights

• Main Activities or Performances: Thematic sessions across five tracks (therapies/access, diagnosis/prevention, social/holistic care, specialized healthcare, HTA) with 90-minute content-filled discussions, expert keynotes, and collaborative workshops; launch of EU Action Plan co-development process including a Steering Group and roadmap.
• Special Traditions or Features: Patient-led policy-shaping with open letters to EU institutions; hybrid format options from past events; sustainability measures like reduced carbon footprint; closed captioning in 12 languages for accessibility.
• Unique Attractions for Visitors: Over 700 participants from diverse stakeholders; input from Programme Committee members like Vytenis Andriukaitis (former EU Commissioner) and Alain Coheur (EESC); networking with ERN associate partners and full partners like EUCOPE.

Why Attend

The ECRD 2026 is crucial for rare disease advocates, policymakers, clinicians, and industry leaders to influence EU strategies at a turning point, offering opportunities to co-create an Action Plan addressing unmet needs, boost biotech competitiveness, and align with the WHO Global Plan, while networking with 700+ global stakeholders to drive policy changes that improve diagnosis, access, and holistic care for the 300 million affected worldwide. Participants will contribute to thematic tracks on therapies, research, and HTA, gaining insights from experts like Daria Julkowska (INSERM) and Maurizio Scarpa (MetabERN), fostering cross-sector collaborations that enhance Europe’s life sciences leadership and reduce inequalities.

Beyond policy impact, the conference provides invaluable networking and knowledge exchange, building on Rare2030’s foresight to shape national implementations and global efforts, with sustainability and inclusivity features ensuring broad participation. Prague’s location facilitates Central European engagement, while EURORDIS’s patient-centered approach empowers advocates to amplify voices. Past events, like ECRD 2024’s hybrid success with an open letter to EU leaders, demonstrate its role in generating concrete recommendations, making attendance a strategic step for advancing rare disease research, treatment access, and holistic support in a competitive landscape.

Date & Duration

• Dates: June 2 – 4, 2026
• Duration: 3 days

Venue / Location

• City: Prague, Czechia
• Main Venue: To be confirmed (likely a major conference center in Prague)
• Address: To be announced

Ticket Information

• How Tickets Are Sold: Online registration via the EURORDIS website; details for 2026 to be announced, typically including early bird and standard rates for in-person and hybrid access.
• Admission Type: Paid (with potential subsidies or free options for advocates)
• Ticket Price Range: Minimum $100 USD (estimated early bird); Maximum $300 USD (standard full access)
• Special Seating or VIP Options: Potential priority access for committee members or sponsors; support opportunities via corporate relations.

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Contact Information

• Email: martina.bergna@eurordis.org (Events Senior Manager); jessica.knollys@eurordis.org (Events Junior Manager); celine.schwob@eurordis.org (Corporate Relations for support)
• Phone: Not specified; contact via email or website form
• Website: https://www.eurordis.org (ECRD section)
• Social Media: EURORDIS on Facebook, Twitter, LinkedIn
• Key Staff: Martina Bergna (Events Senior Manager), Jess Knollys (Events Junior Manager), Céline Schwob (Corporate Relations Director)
• Press/Volunteers: Contact via general inquiry form; press through EURORDIS media channels
• Note: Response time ~24–48 hours; multilingual support available

Getting There

• Nearest Airports: Václav Havel Airport Prague (PRG, ~20 km from city center)
• Public Transport: Airport buses, trains, or taxis to Prague center; metro/trams for venue access
• Parking: Venue-dependent; public parking in Prague
• Other: Rideshares; Prague’s efficient transport network

Accommodation Options

• Preferred Hotels: Hotels in Prague city center with event rates; book early via EURORDIS partners
• Nearby Hotels: 4-5 star options near conference venue
• Booking Note: Early reservation due to high demand; visa support via organizers
• Amenities: Wi-Fi, business facilities

Reviews

• Premier patient-led event for rare disease policy and collaboration.
• Inclusive with multilingual access and sustainability focus.
• Impactful for shaping EU strategies and global advocacy.