https://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.png 0 0 Grant Kerber https://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.png Grant Kerber2014-04-07 13:14:332014-04-29 13:20:21RDLA's April Advocate Luncheon/Conference Call
Advocate’s Luncheon/Conference Call
Wednesday, April 23rd, 2014 12 noon to 1:30 pm
Location: Offices of Polsinelli 1401 Eye Street NW 8th floor Washington, DC, 20005
To view the PowerPoint slides for each presentation click after the title.
Agenda: RDLA APRIL 2014 Agenda
- The Able Act (H.R. 647 and S. 313) – Sara Weir, National Down Syndrome Society Achieving a Better Life Experience (ABLE) part 1 ABLE ACT part 2
- MODDERN Cures Act – Eric Gascho, National Health Council
- An update on the FDA’s budget – Steve Grossman, Alliance for a Stronger FDA Alliance – RDLA Slides April 23
- The Appropriations Process – How the patient community can get involved – Kathryn G. Schubert, Coalition for Health Funding
RDLA Apr 22 approps update
- Update from CMS on the proposed Medicaid Line Extension Rebate policy – Patricia Beggiato, Mastocytosis Society
- Medical Progress NOW!, Ellie Dehoney Research!America MedicalProgressNow LeaveBehind-final
- Ask your Candidates!, Ellie Dehoney, Research!America AYC_Full_Page_Flyer
- New Market Incentive for Orphan Drug Development – Julia Jenkins, The EveryLife Foundation Open Act for RDLA
The agenda is open, please submit agenda items to firstname.lastname@example.org
Updates from RDLA:
- Like us on Facebook and follow us on Twitter to view the latest news and action alerts on legislation affecting patients with rare diseases.
- Click here to view presentations from this year’s Legislative Conference
Mark your Calendars!
- May 7th – Rare Disease Congressional Caucus Briefing – @ RHOB room B-318
- May 21st – RDLA Monthly Meeting
- November 13th – RareVoice Awards Gala