World Orphan Drug Congress 2016にて、弊法人西村由希子理事長がパネリストとして登壇いたしました。
Examining the work done by patient groups worldwide and their interactions with different stakeholders in the rare disease space
· How are patient groups working with regulators and other government institutions to strengthen policy-making and the focus on rare diseases?
· What are the different legal avenues to get access to treatment when treatment is not covered by insurance plans?
· Importance of patient groups to strengthen access to patients and the understanding of disease epidemiology
Bruno Hatschbach, President, National Association of Rare Diseases, Brazil
Angela Patricia Chaves, President, Colombian Federation for Rare Diseases
Yukiko Nishimura, Chief Secretariat of International Relations/President, Japan Patients Association, ASrid
Moderator；Stephen C. Groft, Pharm.D., Senior Advisor to the Director, NCATS, National Institutes of Health