QUALITY-OF-LIFE & AWARENESS
Step one when dealing with rare or poorly understood set of conditions: make every one aware that they exist and that patients need answers.
RAISE AWARENESS. ESPECIALLY WITH THOSE IN POWER.
The most important thing for patients and families is for other people to understand what they are going through.
A major goal of the 2019 unite@thehill and Neuro Connect Summit overall is to bring more awareness to the struggles that patients and their families face every single day living with Chiari malformation, dysautonomia, Ehlers-Danlos syndrome, syringomyelia and their many related conditions. It is especially important to make sure that individuals in power understand these issues, so that real change can come to improve patient and family quality-of-life.
Join us on Monday, May 6, 2019 on Capitol Hill to bring your story to your Congress members and raise awareness with those who can do something about these issues going forward. Email us at firstname.lastname@example.org to inquire about this particular advocacy/lobby day!