RSVP for RDLA’s September Legislative Webinar/Conference Call
Wednesday, September 16th , 2015: 1:00 pm to 2:00 pm EST
1101 14th St. NW, Washington D.C., 20005
Lunch will be served
Click ‘YES’ below to RSVP and receive the call in number and webinar info:
Click ‘YES’ below to RSVP and receive the call in number and webinar info:
Agenda:
1. STAR Act – Andy Taylor, Legislative Director, Office of Rep. McCaul
2. EACT, HR 209 – Stephanie Krenrich, Assistant Director of Public Policy, Cystic Fibrosis Foundation
2. EACT, HR 209 – Stephanie Krenrich, Assistant Director of Public Policy, Cystic Fibrosis Foundation
3. ACE Kids Act – John Knapp, Director of Federal Affairs, Children’s Hospital Association
4. Patient Focused Impact Assessment, S. 1597 – Annie Kennedy, Senior Vice President Legislation and Public Policy, Parent Project Muscular Dystrophy
5. Advancing Research for Neurological Diseases Act, S.849 – Michael Illions, National Director of Advocacy, Pediatric Hydrocephalus Foundation
6. Senate Day of Action – Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
7. RDLA updates – Andy Russell, Associate Director of Government Relations and Advocacy, Rare Disease Legislative Advocates
a. In-District Lobby Days Wrap Up
4. Patient Focused Impact Assessment, S. 1597 – Annie Kennedy, Senior Vice President Legislation and Public Policy, Parent Project Muscular Dystrophy
5. Advancing Research for Neurological Diseases Act, S.849 – Michael Illions, National Director of Advocacy, Pediatric Hydrocephalus Foundation
6. Senate Day of Action – Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
7. RDLA updates – Andy Russell, Associate Director of Government Relations and Advocacy, Rare Disease Legislative Advocates
a. In-District Lobby Days Wrap Up
b. Senate Briefing on the Innovation for Healthier Americans – Save the date, October 8th
c. Rare Voice Awards – Save the date, November 4th
c. Rare Voice Awards – Save the date, November 4th
