UpdatedSeptember 4, 2020
Awareness days, weeks or even months are opportunities to raise awareness, rally a community and raise funding to advance the mission of nonprofit organizations that serve patients living with a rare disease and their families.
By Stephanie Fischer
Awareness days, weeks or even months are opportunities to raise awareness, rally a community and raise funding to advance the mission of nonprofit organizations that serve patients living with a rare disease and their families. Some organizations use an awareness day to mobilize the community to take action on legislation. Others work with supporters to get local or state proclamations from elected officials observing an awareness day, or to get buildings to light up to raise awareness such as for World Sarcoidosis Day on April 13th.
By sharing information about a disease and how it affects them, patients or family members can help educate friends, family and the public in general which could help someone else get diagnosed sooner.
Not sure where to start? If there is an organization for your rare disease, check out the website to see if any awareness days are listed. If not, reach out to volunteer to help establish one. The Children’s Tumor Foundation has a toolkit on getting a proclamation and sample language that could be adapted for other rare diseases. Global Genes has a toolkit on Using Storytelling to Raise Awareness of Your Disease and another toolkit on Speak Easy: A Guide to Public Speaking which includes tips on finding speaking engagements and generating media coverage.
Below is an initial list of rare disease awareness events. Did we miss any? Please let us know by contacting us on social media or emailing us at firstname.lastname@example.org. And join us in helping amplify voices of patients, parents and other advocates around the country (and world) as they raise awareness of their rare diseases!