Making Rare Diseases Count 2026

Contributors Lead author Will Greene Board Member, Foundation for Prader-Willi Research Co-authors Gareth Baynam Medical Director, Rare Care Centre, University of Western Australia Alexandra Heumber Perry Chief Executive Officer, Rare Diseases International Sharon Terry President and Chief Executive Officer, Genetic Alliance World Economic Forum Antonio Estrella Lead, Health for All, Centre for Health and Healthcare Alexion, AstraZeneca Rare Disease Luis Rodriguez Director, State Government Affairs (West) Rohita Sharma Global Head of Strategic Alliances – Patient Experience Deloitte Lois Gilhooly UK Senior Consultant Caitlin Gorman UK Senior Manager Merck KGaA, Darmstadt, Germany Chrysanthus Herrera Head of Health Equity and Access Realization Sanofi Jared Josleyn Senior Vice-President, Global Head of EDGE and Digital Health Acknowledgements Ahmed Alfares Deputy Executive Director, Genomic Medicine Centre of Excellence, King Faisal Specialist Hospital and Research Centre Farnaz Behroozi Head of Pharma, Huma Therapeutics Zilfalil Bin Alwi  Consultant Paediatrician, Clinical Geneticist, HGP2 Working Group Lead, Universiti Sains Malaysia Helene Cederroth Founder and Chief Executive Officer, Wilhelm Foundation Giacomo Chiesi Executive Vice-President, Global Rare Diseases, Chiesi GroupStephanie Delanbanque UK Senior Manager, Deloitte Elina Drakvik Senior Lead, Sitra, the Finnish Innovation Fund Boro Dropulić Executive Director, Caring Cross Mohamed Hassany Assistant Minister for Public Health Projects and Initiatives, Minister of Health and Population, Egypt Rishi Hazarika Global Director, Value and Access Policy, Amgen Zara King UK Associate Director, Deloitte Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity 30