With COVID19 forcing the cancellation of two major fundraisers, we have made many necessary cuts, which include regional educational lectures, patient-to-patient support groups, and research meetings for the first half of 2020.
Patient Support & Educational Lectures
It is a scary feeling when you receive a diagnosis of something that even your doctor has little-to-no knowledge about. While we are still working with doctors and researchers to find those answers, in the meantime, it is SO important for an individual's health to know that they are not alone in this fight and to arm themselves with knowledge. These lectures go beyond the immediate group, they are recorded and shared on our website, at 0 cost. Our Educational Lecture Video Series has been accessed over 3 million times by 193 countries. Help us ensure that once we have all made it through this difficult time, that we are able to fill the remaining months with this much needed program for patients, families, and caregivers around the globe.
In addition to educating patients, we also prioritize educating medical professionals. We support medical seminars that educate health care providers about how to correctly identify, diagnose and treat these often very complicated disorders. We also support research meetings where investigators come together and present their recent research to share what they have learned with others studying these conditions. These meetings and the sharing of knowledge that they permit has been hugely successful at inspiring new research projects that are leading to improved treatments for those who are struggling.