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/
November 11-14, New Orleans – American Academy of Ophthalmology, thousands of people and very scientific https://www.aao.org/annual-meeting
Rare 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 […]
Connecticut 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 […]
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 […]
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, 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 at Mohegan Sun Arena Skybox!
Please join us for an evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with rare disease. Featuring: Nicole Kear, bestselling author of the memoir “Now I See You,” about her diagnosis with retinitis pigmentosa. Christian Guardino, Howie Mandel's 2017 […]
NKOTB Mixtape Tour at Mohegan Sun Arena Skybox Wednesday, July 3, 2019 7:00 p.m. Buy Your Tickets! New Kids On The Block launched their biggest tour in years in May, and Sofia Sees Hope has scored a skybox at Mohegan Sun Arena! Join us as we travel down Memory Lane on THE MIXTAPE TOUR with […]
