A November webinar our organization held featuring two speakers from the National Organization for Rare Disorders (NORD) provided motivational examples of how NBIA families can use their passion and personal stories to promote awareness and advocate for NBIA disorders.
Debbie Drell, NORD’s director of membership, and Kristen Angell, NORD’s associate director of advocacy, emphasized the power of individuals telling their unique story with passion and originality. “Your story is the most valuable tool you have to be an effective advocate,” Angell said at the webinar entitled, “How Can Rare Families Fight Back?”
Angell and Drell urged families be willing to share their stories and to take part in Rare Disease Day 2022 on Feb. 28. As an example of the impact of compelling storytelling, the NBIA Disorders Association video for NORD Rare Disease Day 2021 spotlighted our families and attracted over 17,000 views. It won an award from NORD for best video and resulted in NORD providing speakers for the webinar.
Other ways the webinar speakers said that families can fight back against rare disorders and have an impact include:
- Meeting with legislators to raise their awareness, share information and support legislative proposals
- Bringing awareness to your local community. Fundraisers and stories in the local media are just two ways to do this.
- Signing up for the Rare Disease Network® (RAN), the nation’s leading advocacy network for rare disorders
- Joining discussion groups
- Taking part in Rare Disease Day and use the social media tags, #showyourstripes #RareDiseaseDay
- Being creative
The Colosseum in Rome Lights Up for Rare
One creative awareness-raising project, Light Up for Rare, involves asking monuments and public buildings around the world to, literally, shine a spotlight on rare disorders. The NORD speakers said they were proud during Rare Disease Day last year to get the Empire State Building lit up, as well as the National Institutes of Health. Other famous sites that have participated include the Colosseum in Rome, the Leaning Tower of Pisa in Italy, the Eiffel Tower in Paris and Niagara Falls in New York. In addition, many of the world’s tallest buildings were lit up last year, they said.
They mentioned it was virtually impossible to get the White House to light up for a cause, but an NBIA parent on the webinar, Paul Stronski, of Arlington, Virginia, said he would encourage his White House contacts and ask. Stronski also said he would try to get the Carnegie Endowment on Massachusetts Avenue involved as well.
The webinar also included ideas on how to promote policy and advocacy on local, state, and federal levels, including campaigns organized and supported by NORD.
The Rare Action Network (www.rareaction.org) is a powerful resource, the speakers said. It offers discussion forums, state report cards outlining state-based policies, action centers for each state, educational tools and training workshops. Joining RAN is an easy way to connect with others and receive alerts about important events and campaigns that affect rare disease families in your area. It even offers coloring pages you can download for the kids.
In 2022, RAN will relaunch their state ambassador program, selecting and training volunteers to become leaders for establishing and building networks within their state.
Rare Disease Day offers families a perfect time to get involved and raise awareness of NBIA disorders. The global reach of the platform grows larger year by year. Visit www.rarediseaseday.org and start preparing to have an impact.
You can view the webinar for more information on ways to be an advocate for NBIA disorders. WEBINAR