Festival of Genomics and Rare New England partnered to offer a stage area targeted to patients and families living with rare diseases!
Front Line Genomics has a mission to help deliver the benefits of genomics faster. Through their website, magazine and the Festivals of Genomics, they support scientists, clinicians, business/research leaders and officials, from academia, research institutes, industry, healthcare and government organisations to realise the true potential of genomic medicine.
Each year they host Festivals in 3 locations - London, San Diego and Boston "to bring the benefits of genomics to patients, faster".
Festival of Genomics offers an abundance of information about genomics and brings together researchers, healthcare organizations, academia, patient advocacy organizations, industry, and more! These stakeholders who are living and working within the field of genomics have an opportunity to share insight and learn new ways to incorporate this knowledge to benefit patients.
Rare New England and Festival of Genomics partnered to bring in patients and families to engage with those working in genomics; to meet, share perspectives, and gain information that will empower them to improve and maintain best quality of life while living with disease.
We are organizing a stage area for the patient community that will present on education and resources and will be equally valuable for all stakeholders to learn more about the families they serve.
Festival of Genomics was held at the
on October 3 & 4, 2017 while RNE will participate within a stage area on
Oct 4th.
Click here to learn more about the Rare Disease Patient Track!
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
1:25to 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
by National Institute of Health (NIH)
Scroll down for agenda and speakers.
Amel Karaa, MD, Massachusetts General Hospital, RNE BOD
John Campbell
RNE BOD
Lisa Deck
RNE Volunteer Advocate, Sister@Heart, American Heart Association
Mary - Frances Garber, CGC, Listening, Reflecting, Healing
Jessica Shriver, MA, MS
RNE BOD
Alan Holbrook
Rare Action MA co-Ambassador, National Organization for Rare Disorders
Sheila Sutti, MS, CGC, Brigham & Woman's Hospital
Karen Gripp, MD, FAAP; FACMG, A.I. duPont Hospital for Children
Jennifer Leonard, International FOXG1 Foundation
Registration to the Festival of Genomics was FREE for patients and patients groups!
