Festival of Genomics

Festival of Genomics and Rare New England partnered to offer a stage area targeted to patients and families living with rare diseases!

Help those touched by rare disease find community and support.

Meet Our Speakers

Alan Holbrook

Amel Karaa, M

Jennifer Leonard

Jessica Shriver, MA, MS

John Campbell

Karen Gripp, MD, FAAP; FACMG

Mary - Frances Garber, CGC

Lisa Deck

Sheila Sutti, MS, CGC

RNE Stage Agenda

10:35 to 10:40 Welcome

10:40 to 11:10 “Genomics and Genetic Testing”, Sheila Sutti, M.S., C.G.C.

11:10 to 11:40 “Ethics in Genetics”, Jessica Shriver MS, MA, Rare New England, BOD

11:40 to 12:55 Break and Sponsored opportunity organized by FLG

12:55 to 1:25 “How Genetic Counselors can help Patients and Families with Rare Conditions”, Mary-Frances Garber, CGC, sponsored by New England Regional Genetics Group (NERGG)

1:25 to 1:55 "Patient Focused Clinical Trials: Challenges and
Opportunities of the Genomics Revolution for
Pharma" John Campbell, GlaxoSmithKline, Rare New England BOD

1:25 to 2:15 “A Survivor’s Perspective: Sharing my Rare Disease Story and the Patient Experience” Lisa Deck, Rare New England volunteer advocate, Sisters@Heart, American Heart Association

2:15 to 2:30 Break

2:30 to 2:50 “The Drama of DNA Play” Lynne Burke, NIH

2:50 to 3:00 Break

3:00 to 3:50 Discussion Panel “Improving Lives in RD with Collaboration Between Stakeholders” Moderator: John Campbell, Panelists: Amel Karaa, MD, MGH, Rare New England, BOD, Karen Gripp, MD, FAAP, FACMG, Julie Gortze, RN, Rare New England, CEO, Alan Holbrook, RareAction, National Organization for Rare Disorders, Jennifer Leonard, International FOXG1 Foundation