2015 Rare Disease Legislative Conference: Videos


2015 Legislative Conference & Lobby Day

Presented by   

Abbive Logo

FHI 360, 1825 Connecticut Avenue Northwest, Washington DC

Tuesday, February 24, 2015


(Click on the linked titles to view the presentations)

9:15 – 9:30 am           Welcome – Overview of the Week 

Conference Moderator:  Dean Suhr, Genetic Alliance


9:30 – 10:10 am          Overview of the 114th Congress

Congress After the Election and a Health Policy Forecast, Joanne Kenen, Health Care Editor, Politico

Congressional Committees That Shape the Future of Health, Nick Mannetto, Principal, FaegreBD Consulting


10:10 – 10:40 am        Know Your Lobbying RightsSiobhan Rausch, Partner, Hogan Lovells


10:40 – 11:40 pm         Avenues for Impact

Appropriations – Katie Schubert, Vice President, Coalition for Health Funding & CRD Associates

Legislation – Cheryl Jaeger, Principal, Williams & Jensen

Regulatory Joel White, Founder & President, Horizon Government Affairs


12:10 – 1:30 pm         21st Century Cures Initiative

The Path to 21 Century Cures – Carly McWilliams, Professional Staff – Subcommittee on Health, House Energy & Commerce Committee

OPEN ACT HR 971 (Orphan Product Extensions Now Accelerating Cures & Treatments) – Saul Hernandez, Legislative Director, Office of Rep. Butterfield (D-NC)

CURE (Compassionate Use & Reform & Enhancement) Act HR 909 (Expanded Access) –Andy Taylor, Legislative Director, Office of  Rep. McCaul (R-TX)

Dormant Therapies/MODDERN – Eric Gascho, Assistant Vice President for Government Affairs, National Health Council

Advancing Research for Neurological Diseases Act HR 292 – Jennifer Sheridan Palute, Policy Director, Parkinson’s Action Network


1:30 – 2:10 pm           Prepping for your Hill Meetings  

 Lobbying Tips & Overview of Schedules Stephanie Vance, Owner & Founder, Advocacy Associates

Giving your two minute personal story – Kristine PJ Caalim, Founder, Zequing For a Cure

A Symbol for the Rare Disease Community: Gene Ribbons – Carrie Ostrea, Director of Advocacy, Global Genes

Leave behinds & the Caucus Ask – Andy Russell, Associate Director, EveryLife Foundation for Rare Diseases

2:10 – 2:40 pm           Break & Distribution of Hill Day Schedules

2:40 – 3:30 pm           Break-Out Skill Training Workshops   

Starting your own Non-profit to Grow your Advocacy Impact –Barbara Lavery, Vice President of Strategic Alliances, Global Genes Project & Mike Illions, Vice President, Pediatric Hydrocephalus Organization

  • Tips and tools for getting your rare disease organization to the next level. Learn about obtaining 501c3 status, creating a mission, vision, and a board of directors. Essential skills for any aspiring organization.

Polish & Practice your Presentation Pitch – Joe LaMontain, Vice President, Reingold Inc.

  • Learn about persuasive and effective communication for maximum advocacy impact. Get tips for making a lasting impression and laying the groundwork to build a first-time meeting into a lasting relationship.

Introducing Legislation – Julia Jenkins, Executive Director, EveryLife Foundation

  • Hear about the do’s and don’ts for introducing legislation, coalition building, and how to move a bill through the legislative process.

Social Media Advocacy – Joel Cohen, Non-Profits, Politics & Advocacy, Facebook

  • Learn some insider tips for leveraging social media to raise awareness and build an action network for your cause.

  3:40 – 4:30 pm           State/Regional Break-Out Sessions Practice Meetings

      4:40 pm                      Closing Remarks

      5:00 pm                     End Conference