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Mai 2024

12 Labours of ECRD

Dive into „12 Labours of ECRD,“ an engaging and informative comic strip that chronicles the significant milestones and collective advocacy efforts within the European rare disease community from 2001 to 2024. This narrative spans 12 editions of the European Conference on Rare Diseases (ECRD), crafted not only to educate but also to inspire and mobilise stakeholders involved in rare disease policy, research, and patient care.

Set in the heart of Europe, where history and innovation intertwine, the comic unfolds the saga of four tenacious champions: Emilia, Camilo, Rosalind, and Damiano. Each character, whether affected personally or professionally by rare diseases, embarks on a transformative journey to catalyse change and dismantle the barriers faced by those living with rare conditions. Their path takes them from the cobblestone streets of Poland to the academic halls of Portugal, through the policymaking corridors in the Netherlands, and into the vibrant heart of Italy. Along the way, they craft a mosaic of hope – each piece a testament to the resilience and determination of the rare disease community.

Through their twelve labours, representing key achievements in rare disease advocacy, we witness the champions‘ heroic efforts that echo the mythic quests of antiquity, yet are firmly rooted in the real-world victories and ongoing struggles of today. Each chapter marks a step forward in the relentless pursuit of equity, access, and excellence in healthcare.

Join Emilia, Camilo, Rosalind, and Damiano on their odyssey, and witness a story of unity, advocacy, and unwavering hope. Their journey serves as a beacon for all navigating the complex waters of rare diseases, illustrating how, together, we can turn the tide and illuminate the path towards a future filled with understanding, support, and cutting-edge care.

12 Labours:

  1. 2001: First ECRD & EU Orphan Medicinal Products Regulation Implementation
    This significant regulation led to the approval of 250 orphan products, marking a pivotal moment in promoting the development of treatments for rare diseases across the EU.
  2. 2009: Adoption of the EU Council Recommendation on an Action in the Field of Rare Diseases
    The first comprehensive EU strategy for rare diseases, this recommendation urged EU Member States to develop and implement national plans for rare diseases, aiming to improve diagnosis, treatment, and patient care.
  3. 2011: IRDiRC Launches and Sets Ambitious Goals and Vision
    The International Rare Diseases Research Consortium (IRDiRC) is launched by the European Commission and the US NIH, setting ambitious goals, including introducing 1,000 new rare disease treatments by 2027.
  4. 2013: Cross-Border Healthcare Directive Came into Force
    Facilitating patients’ access to healthcare services across EU countries, this directive was especially crucial for rare disease patients seeking specialised treatment not available in their home country.
  5. 2017: Launch of the European Reference Networks (ERNs)
    ERNs were established to connect healthcare providers and experts across Europe, enhancing the diagnosis and treatment of rare and complex diseases.
  6. 2017: Orphanet’s 20th Anniversary
    Celebrating two decades, Orphanet has become pivotal knowledge resource for the rare disease community, providing valuable information on rare diseases and orphan drugs, supporting patients, healthcare professionals, and researchers.
  7. 2019: European Joint Programme on Rare Diseases (EJP RD) Launch
    This programme was initiated to foster collaboration in rare disease research, aiming to improve outcomes for rare disease patients.
  8. 2019: Rare Diseases Included in UN Political Declaration on UHC
    This inclusion marked a global recognition of the need to address rare diseases within the framework of Universal Health Coverage, committing to strengthen efforts worldwide.
  9. 2020: EU4Health Programme 2021–2027
    Launched with a significant budget, this programme aims to bolster health systems across the EU, with part of its focus on improving care for rare disease patients.
  10. 2021: Recommendations of the Rare 2030 Foresight Study
    Providing a comprehensive roadmap for rare diseases policy in Europe, these recommendations aim to guide future actions to improve the lives of rare disease patients.
  11. 2021: Adoption of the First-Ever UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families
    This landmark resolution highlights the global commitment to improving care, research, and treatment for rare diseases.
  12. 2022: 21 Member States Endorse Czech EU Presidency’s Call to Action on Rare Diseases
    This endorsement underlines the continued and growing EU-wide support for advancing rare disease care, research, and policy and the call for a European Action Plan for RDs.