PPT-Management of Rare Diseases: An Integrated Approach to Break Down Barriers and Facilitate

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 . Ros. Standish, Occupational Therapist & . Dr Alice Wells, . Clinical Psychologist . . Level 2 Pain Training. Self Management and Chronic Pain. 7. th. January 2016. Schedule. . What is self-management?. Ros. Standish, Occupational Therapist . & . Dr Alice Wells, Clinical Psychologist . . Level 2 Pain Training. Self Management and Chronic Pain. 7. th. January 2016. Schedule. What is self-management?. Stephen Senn, . Artur. Araujo and Sonia . Leite. (c) Stephen Senn. 1. Acknowledgements. This work is partly supported by the European Union’s 7th Framework Programme for research, technological development and demonstration under grant agreement no. 602552. “IDEAL”. Dr. Bruce E. Bloom. President and Chief Science Officer. APBDRF Scientific Conference. Dec. 6, 2016. The Problem . The Problem . The Problem . The Problem . 7000 unsolved rare diseases . 500M people affected. 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. 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 caregivers, and the dedicated researchers seeking to improve their lives. Through the stories of real people, we present the everyday realities and challen 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 SECTORhealthcare servicesCOUNTRYRomaniaLEAD ORGANISATIONThe NoRo Centre partner of Eurordis a non-governmental patient-driven alliance of patient organisations and individuals active in the field of r 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. Jane Perlmutter. The Gemini Group. CTTI. John Adams. PKU and Allied Disorders. Best Medicines Coalition. Antoine Daher. Casa Hunter. Brazilian Federation of Rare Disease Associations. ICH E6 . June 4, 2020.