Whether you think PANS/PANDAS is a Rare Disease or actually just rarely diagnosed, it is a day to educate people about PANS/PANDAS. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
As part of this discussion, this day is a perfect time to talk about EQUITY. Equity for people living with a rare disease is equitable access to Diagnosis, Treatment, Health, Social Care and Opportunity. As we speak to schools, doctors, legislators, it is important to address issues of EQUITY and our lack of access to it. At ASPIRE, we aspire to Equity for all those affected by PANS/PANDAS. Will you join us in this effort?
PANS is listed under the NIH’s Rare Disease website and is a good resource.
For more information on Rare Disease Day