Resources
Google can be a bit overwhelming when dealing with a new diagnosis. I have linked a few of my favorite resources below.
National Organization for Rare Disorders
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Genetic and Rare Diseases Information Center
The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
National Fragile X Foundation
To increase public and professional awareness of Fragile X, to influence public policy, support legislative advocacy, and increase funding for research
