Meeting Archive:
Policy 101: Role of Government on Rare Disease Policy and Tips to Advocate for You and Your Loved One


Meeting Description:
Your local and state governments, as well as the Federal government, each play an integral role in enacting and implementing policy that affects the health and well-being of individuals with rare diseases.
 
Join NORD for an educational webinar that explains the role of each government and the rare disease policies they oversee. You will also learn how to successfully advocate with each government for you or your loved one. Upon completion, you will understand the nuanced roles each government plays, and how you can advocate with each.
Details
Date: Tue, Feb 20, 2018
Time: 02:00 PM EST
Duration: 1 hour
Host(s): National Organization for Rare Disorders
 Presenter Information
SPEAKER
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Paul Melmeyer serves as the Director of Federal Policy at the National Organization for Rare Disorders (NORD). In this role, Paul engages in federal congressional and regulatory advocacy on behalf of rare disease patients and the organizations that serve them. His overriding mission is to improve the lives of patients with rare diseases and increase incentives for the development of orphan drugs, devices, and diagnostics. Since joining NORD in 2013, Paul has advocated successfully for the passage of various laws and has crafted comments on NORD’s behalf for numerous proposed rules and guidances. Prior to joining NORD, Paul spent time at the Center for American Progress, AARP, and in the Senate.

SPEAKER
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Tim Boyd is the Director of State Policy for the National Organization for Rare Disorders (NORD). In this role he is responsible for NORD’s public policy advocacy in all 50 states. Prior to joining NORD in 2015, Tim worked on federal, state and global HIV/AIDS policy. Tim has a Master's in Public Health (MPH) from George Washington University.

HOST
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As NORD’s Director of Education Programs, Sika Dunyoh manages initiatives designed for healthcare professionals and patients, including Continuing Medical Education (CME) programs. Sika has more than 10 years of experience in creating and managing programs for scientific societies and in developing engaging educational resources for scientific, technical and medical (STM) professionals and researchers. 
 
She is also the founder of Shine Light on Rare Diseases, which is an initiative she established in memory of her sister who passed away from a rare disease. The goal of Shine Light on Rare Diseases is to highlight the prevalence of rare diseases and to help people with rare diseases receive faster diagnoses to help save and improve the quality and length of their lives.