October 2 • 500 Kendall Street • SanoFI Genzyme • First Floor
Noon Welcoming Remarks: Bo Bigelow and Daniel DeFabio
SCReeNiNG SlATe: RARe FiGHTeRS (61 minutes) presented by The PEP
1:00 PM Speakers: Michelle Hall & Joselin Linder
2:30 PM Emcee: Steph Palermo
SCReeNiNG SlATe: RARe BReAKTHRouGHS (60 minutes) presented by SanoFI Genzyme
3:30 PM Magic Wheelchair presentation followed bySpeakers: Janis Creedon, Alisa Shakarian, Sam Falsetti
5:00 PM
SCReeNiNG SlATe: RARe iNSiGHTS (59 minutes) presented by Premier Research
6:00 PM Beyond the Diagnosis portrait unveiling followed bySpeaker: Lisa Phelps, Director of Marketing and Community Relations, NORD
October 3 • 11:00 AM Boston Convention Center
We are presenting a program at the Festival of Genomics. Admission is free to rare patients. A paid conference pass is required for others to attend.
This event is not run by Disorder: RDFF but may be of interest to our guests.
Key Speaker: Patricia Weltin of RDUF (25 minutes) followed by three of our short films.
Panel Discussion: Directors Bo Bigelow, Daniel DeFabio, and Carl Mason (25 minutes)
2:00 PM Brattle Theater (location for the remainder of day)
Welcoming remarks from: Marjorie Stewart-Hart, Head of US and R&D Patient Advocacy at Shire.
SCReeNiNG SlATe: RARe ADveNTuReS (62 minutes) presented by Horizon Pharma
3:00 PM Speaker: Dekel Gelbman, CEO, FDNA
4:30 PM
SCReeNiNG SlATe: RARe HeRoeS (83 minutes) presented by 32 Mile Media
6:00 PM Speakers: Juliet Moritz, Premier Research
7:00 PM
SCReeNiNG SlATe: RARe DiAGNoSiS (61.5 minutes) presented by The Menkes Foundation
8:00 PM Speakers: Mike Walsh of Patient Advocacy Strategies Danae Bartke, PKU Organization of Illinois, President, HCU Network America, Executive Director
Frank Glavin, CEO, Orphan Technologies Dr. Harvey Levy, Boston Children’s Hospital, Harvard Medical School Carl Mason, Director of “Imagine”
9:00 PM