Front Line Genomics Release: Putting Patients At The Heart Of The Process
Published: Sep 22, 2017
Festival of Genomics Boston opens its doors to patients.
BOSTON--(BUSINESS WIRE)--From October 3-4, 2017, Festival of Genomics Boston will welcome key figures from biotech, healthcare, drug development and academic research. The convention gathers to present recent developments in human genomics, and discuss the challenges applying them to healthcare. This year, the organisers, Front Line Genomics, are actively inviting patients of genetic conditions, their families and support groups, to participate through a specifically tailored programme of talks, workshops and films.
In partnership with patient facing charitable organization, Rare New England, this year’s Festival of Genomics Boston aims to help patients engage with researchers and clinicians directly. The existing communication barrier is an important challenge to overcome to help make precision medicine a reality. Patients will have the opportunity to be involved in sessions covering genetic testing, clinical trials, ethics, and research collaborations. These sessions are a real step in a movement to make patients an equal stakeholder in translational genomic research.
“We hear a lot about ‘patient power’ and treating patients as ‘partners’. However, when you speak to patients, those that feel truly empowered are still a minority. There is a tremendous willingness from patients and researchers to work closer together, but communal platforms are still uncommon. We are making a concerted effort to provide that essential platform this year, to give those willing a productive arena to educate each other and work towards mutually beneficial progress,” said Helen Curl, Group Event Director at Front Line Genomics.
In addition to the co-curated timetable of sessions, the Festival of Genomics Boston features several open sessions discussing similar themes. Journalist Carl Zimmer will present his experience of whole genome sequencing, with those who helped him analyse it, as made popular in his serialised STAT News feature ‘Game of Genomes’. The International FOXG1 Foundation, a featured patient advocacy group this year, will be giving a comprehensive presentation on ‘A Patient’s Perspective on Precision Medicine’. ‘What the Hell is Precision Medicine Anyway!?’, one of the principle workshops, is being coordinated by representatives from Harvard Medical School, Mayo Clinic, drug developers Pfizer and Regeneron, and the Patient Advocacy Foundation. The workshop will identify barriers to integrating precision medicine into mainstream healthcare, and outline steps to overcome them.
“We’re excited by the potential of this year’s meeting agenda. There’s a growing sense that we all want the same things, so this will be a great opportunity for people to talk openly and come away with some actions to help drive the field forward and start making the promise of genomics in healthcare a much more concrete proposition for patients,” Curl continues. “We wholeheartedly encourage anyone working in and around genomics, and anyone affected by genetic conditions, to come to the Festival of Genomics Boston to lend their voice and passion to help us make progress as a community.”
Registration to attend Festival of Genomics Boston is free for patients and patient groups using code FOG109 on the website. The event takes place on October 3-4, 2017 at the Boston Exhibition and Convention Center. Full event details can be found at http://www.festivalofgenomicsboston.com/rare-disease-patient-track
About Front Line Genomics
Front Line Genomics is a media company covering the field of human genomics. The group produces the Festival of Genomics series of events and Front Line Genomics magazine, a free periodical offering narrative based coverage on all things genomics, as well as the educational series of Genomics 101 e-books. This is supported by timely news and features published daily on the genomics focused website www.frontlinegenomics.com. Front Line Genomics’ mission is to help deliver the benefits of genomics, faster.
About Rare New England
Rare New England's goal is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources, and build foundations for support to improve patient quality of life. RNE aims to bridge the gap between patients and families, clinics and clinicians, and the many resources available to them by existing government programs, advocacy organizations and patient groups, and state agencies, in the New England area.
Festival of Genomics Boston
Yvonne Nartey, Senior Marketing Manager
Rare New England
Julie Gortze RN, Founder
Front Line Genomics
Frida-Marie Holme, Digital Content Manager