Global Genes
September 14-15, Irvine, California, Global Genes – exclusively for rare disease advocacy groups http://globalgenes.cvent.com/events/2017-rare-patient-advocacy-summit/event-summary-b667f7db423b463f80ab2ef70b16b4a7.aspx
Events
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Dinner in the Dark
October 14 - Dinner in the Dark LEARN MORE ABOUT THIS EVENT
National Organization for Rare Disorders (NORD) annual Breakthrough Summit
October 16-17, Washington DC, National Organization for Rare Disorders (NORD) annual Breakthrough Summit – information about advocacy, they have meetings for members, might meet potential collaborators https://rarediseases.org/summit-overview/
American Academy of Ophthalmology
November 11-14, New Orleans – American Academy of Ophthalmology, thousands of people and very scientific https://www.aao.org/annual-meeting
2018 Rare Disease Day at Quinnipiac University
Frank H. Netter MD School of Medicine 370 Bassett Rd, North Haven, ConnecticutRare Disease Day is a global event when we raise awareness of some of the 7,000 different rare diseases. Although each disease on its own is rare, amazingly 1 in 10 Americans is living with a rare disease! The goal of RDD is to connect patients, families, caregivers, and patient organizations; to provide opportunities for […]
CT Rare Disease Day 2018
CT Legislative Office Building 300 Capitol Avenue, Hartford, CT, United StatesConnecticut Rare Disease Day Advocacy Event February 28, 2018 at 8:30 am Legislative Office Building, 300 Capitol Avenue, Hartford, CT 06106 The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored. This is an opportunity for patients, caregivers, medical professionals and industry representatives to […]
Webinar: Know Your Gene
You or someone you know has LCA, RP or some other rare retinal disease. But do you know what your genetic mutation is? Where to go for testing and how you can access free testing? How to work with a genetic counselor? Maybe you know the exact genetic mutation - but do you know what's […]
Free
Global Genes and EveryLife Foundation for Rare Diseases RARE on the Road Rare Disease Leadership Tours
RARE on the Road brings critical education and insights to rare disease patients, advocates and caregivers, while collaborating in an interactive, engaging environment. Topics include the Patients’ Role and Drug Development, along with breakout sessions and hands-on workshops. June 9 • Houston, TX June 30 • Salt Lake City, UT July 21 • Nashville, TN […]
VISIONS 2018 National Conference
VISIONS, the national conference of the Foundation Fighting Blindness, is the only event of its kind—created solely for individuals and families who are affected by retinal diseases. Find access to information on the latest retinal research and clinical trials, the doctors performing the work, and other families from around the country living with the same […]
A Pentatonix Christmas Tour
Mohegan Sun 1 Mohegan Sun Blvd, Uncasville, CT, United StatesA Pentatonix Christmas Tour at Mohegan Sun Arena Skybox!
$80