2014 Rare Disease Legislative Conference Presentations

RDLA’s 2014 Legislative Conference took place on Feb. 25 at the National Press Club in Washington D.C. Over 160 rare disease advocates were in attendance, with 25 speakers educating and training the advocates how to make their voices heard. Click on the title to view the video from the conference.

Intro

Dean Suhr, MLD Foundation – We Are One

State Level Organization & Advocacy Efforts 

Charles Mohan, Jr., United Mitochondrial Disease Foundation –  Patient Organization Best Practices

Mary Cobb, New Jersey Rare – Rare New Jersey Engagement at the State Level

Blair Van Brunt, Shwachman-Diamond Syndrome Foundation – Creating a Rare Disease Day State House Event – Who How and Why

Affordable Care Act Implementation

Joel White, Horizon Government Affairs – Impact of the ACA Fact and Fiction

Robert Popovian, Pfizer – State Level ACA Implementation

Newborn Screening

Emil Wigode, March of Dimes – Federal Role in Newborn Screening & The Newborn Screening Saves Lives Reauthorization Act

Natasha Bonhomme, Baby’s First Tests Baby’s First Test What you need to know

Anna Grantham, Hunter’s Hope Foundation – Family Advocates for Newborn Screening

Keynote

Art Estopinan, Parent advocate, Mitochondrial Disease, Chief of Staff, Office of Representative Ros-Lehtinen

2014 Midterm Elections

Robert Houton, Whitmer & Worrall, LLC

Nicholas P. Mannetto, FaegreBD Consulting, 2014 Midterm Elections, and What This Means for You

Industry Stakeholders

Howard Moon, Amgen

Jeanne Haggarty, BIO

Samantha Ventimiglia, Vertex

Kelly Slone, National Venture Capital Association

Todd Gillenwater, California Healthcare Institute – California’s Bio-medical Ecosystem

Patient Organization Stakeholders

Miriam O’Day, National Organization for Rare Disorders

Natasha Bonhomme, Genetic Alliance – Genetic Alliance

Nicole Boice, Global Genes – Advocacy to Activism What We Do

Emil Kakkis MD PhD, EveryLife Foundation for Rare Disease – EveryLife Foundation for Rare Diseases

Stephanie Krenrich, Cystic Fibrosis Foundation

Eric Gascho, National Health Council – The Role of the National Health Council

Jeff Allen PhD, Friends of Cancer Research

Cecilia Arradaza, FasterCures

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