Once you’ve connected with a patient advocacy organization that can provide support and encouragement after your diagnosis, consider connecting with a national or state-based organization for your disease.
This is an important and helpful way to learn more about your disease from a reliable, trusted source. A general internet search can usually help to identify a national organization associated with a specific disease. Also, there are several websites that can be helpful in identifying national, disease-specific advocacy organizations.
For example, the NORD website provides a library of information for more than 1,200 rare diseases, including national and international advocacy and research organizations for each disease. Also, the National Institutes of Health (NIH) Genetic and Rare Disease Information Center (GARD) website contains an easy-to-use search tool that lists national and international advocacy organizations for specific diseases.
In Alabama, the grassroots organization, Alabama Rare, focuses on uniting Alabamians around the rare disease population within our state. It provides support for individuals and families as well as educates the broader community about rare diseases. Also, the organization collaborates with stakeholders in Alabama to create awareness of the rare disease population’s needs and advocate for necessary change to improve healthcare delivery. Alabama Rare is involved in key policy initiatives including:
– Medicaid expansion in Alabama
– Expanding the state Newborn Screening Panel (NSP) of genetic disorders-
– Comprehensive insurance coverage of medical nutrition
– Coverage of whole genome and whole exome sequencing genetic testing