PPT-RARE DISEASES AND THE EUROPEAN HEALTH DATA SPACE

Juan Fernando Muñoz General Secretary for Digital Health Information and Innovation New features introduced Field Natural persons Rights Obligations of States Entities. “. EMERGING THERAPIES FOR RARE DISEASES. ”. Emil D. Kakkis, M.D., Ph.D. .. President and . Founder. CENTER FOR ORPHAN DISEASE RESEARCH . AND . THERAPY SYMPOSIUM. FRIDAY . MAY 2, 2014. right to . health. of people living . with. rare . diseases.  . Rare Diseases Policy Event . on . February . 10. th. - 2017 –Geneva - . switzerland. . The contribution of fitima (. international fondation . Latvian . Alliance for Rare . Diseases. Baiba . Ziemele. . 22.08.2015.. Rare diseases. Rare diseases are life-threatening, chronically debilitating, rare and with a high degree of . complexity. < 5 in 10 000 people. in the United States. Paul Melmeyer. Associate. . Director. of Public Policy. National . Organization. for Rare . Disorders. (NORD). Where. . W. e. . W. ere. What. . We. . H. ave . Accomplished. “2. nd. World Congress on Rare Diseases and Orphan Drugs”. Date: 29. th. and 30. th. June, 2017. “I am . Dr.. Gayathri Balasubramanian, a part of focus scientific research . center. , the scientific arm of . European. perspective. EUCARE session, Porto, August 27th, 2010. Michel . Baulac. , Paris. ILAE . Vice-President. The . European. Scope. EUCARE = Joint . Task. Force . from. ILAE and IBE. European. inclusion 1 6.19 Rare diseases See Background Paper 6.19 (BP6_19Rare.pdf) Background In the EU, a disease is considered to be rare when the number of people affected is less than 5 per 10 000. There 1 / 3 ‘ New scientific paper confi rms 300 m illion people living with a rare disease worldwide Paris, 17 September 2019 - A new scientific paper confirms the number of people living with a rar About NCATS and Translational ScienceNCATS is one of 27 Institutes and Centers at the National Institutes of Health. The Center was established to transform the translational process so Translation is biomedical R&D industry. CHI represents more than 275 leading medical device, biotechnology, diagnostics and pharmaceutical companies and public and private academic biomedical research organizations Rare Disease DayFrequently Asked QuestionsWhat is a rare disease The most complete listing rarediseasesinfonihgov/diseasesWho is affected by rare diseasesManybut not allrare diseases are genetic Some begs the question: how long will it take other countries to similarly oer access to genomic medicine? What key barriers exist to the implementation of genomic medicine?Given the current disparities i Page 53 of 60 Ralf‐Dieter Hilgers*, Franz KönigDepartment of Medical Statistics, RWTH Universit Aachen, Pauwelstr 30, D‐ 52074 Aachen, Germany Dr. RalfDieter Hilgers, Department of Medical Statis . to. . care. and . on. European . cooperation. EESC . public. . hearing. :. Ensuring. . strong. European . solidarity. . for. . rare. . disease. . patients. Prof. Dr. . Ildiko. . Horvath.