Sofia Sees Hope has joined The Travelers Championship PGA golf tournament’s Birdies for Charity program, and we hope you will join us! Birdies for Charity is a pledge-based fundraiser. Sofia Sees Hope can earn donations based upon the number of birdies made during the 2017 Travelers Championship, June 19-25, 2017. By pledging an amount per birdie, […]
August 11-15, Boston, American Society of Retina Specialists – very relevant and specialized, possibility of free day passes, at least to the exhibit hall, for nonprofit organizations https://www.asrs.org/annual-meeting
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
October 14 - Dinner in the Dark LEARN MORE ABOUT THIS EVENT
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 […]