Rare Disease Day
Rare Disease Day's main objective is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' live. Their massive campaign has reached all corners of the world, asking people, communities and institutions to show their support by hosting events around Rare Disease Day (Feb 28th). Given that OMA is a RARE condition, we believed our way to support their cause was by launching our website on this special day.
Other institutions who have collaborated with us by sharing their OMA-related findings
The Joubert Syndrome and Related Disorders Foundation
The JSRDF is a nonprofit organization that has been providing information to families all over the world since 1992. Some people with OMA have been found to have Joubert Syndrome as the underlying cause. They host a bi-annual conference where they also talk about OMA-related issues. Their work is inspiring, please consider visiting their website to learn more.
For their events info, including the Link to Information and Family Exchange,
please visit: http://www.jsrdf.org/events
The University of Washington, Hindbrain Malformation Research Program
This research program has reviewed the cases of dozens of OMA patients, in most cases helping them find the underlying cause to their disorder. Please consider participating in this research, the more people participating, the better the conclusions. They accept cases from all over the world and are happy to answer any questions you may have.
Ph: 800-246-6312 (toll free)
From Hospitals to Universities. From Doctors to Researchers.
From Goverment Entities to Foundations.
OcularMotorApraxia.org exists today because of their support.