Learning About Legislative Advocacy
SRNA acts as a patient advocacy group by offering education and support, supporting research, and raising awareness for rare neuroimmune disorders. A person diagnosed or care partner, like a parent, will also engage in self-advocacy. Self-advocacy is when someone communicates, conveys, or asserts their own interests, desires, needs, and rights, but other forms of advocacy are just as important.
Another type of advocacy is legislative advocacy. For people living in the United States, this may include strategic actions like telling policymakers your story and challenges, sharing your views on an issue related to living with a rare disease or asking your representative to vote a certain way on a bill.
Legislators have the power to pass bills into law that will have a direct impact on people living with rare disorders like ADEM, AFM, MOGAD, NMOSD, ON, and TM. However, knowing how to contact public officials and take action can be overwhelming for someone who hasn’t done it before.
In September, we hosted a Community Connections session focused on legislative advocacy led by Leah Campbell, rare disease advocate and SRNA Peer Connect Leader, and Jim Sliney, Chief Patient Officer for The Patient Helpline and Patients Rising. Jim explains the need for advocacy: “When any patient or family member encounters obstacles in healthcare, they have a choice – they can be passive, they can give up, or they get active and advocate for themselves.”
He continues: “Rare disease patients share many of the same problems that other patients face, but they also face a host of issues exclusive to being rare. This means rare patients have to work harder to get (often) less out of healthcare than their non-rare peers. All that work is exhausting and can take a heavy toll on mental health. One thing that can counter that toll and exhaustion is sharing the load, which you do by getting involved with support networks like SRNA.”
Leah described the ways that she had taken action to enact change as a rare disease advocate living with Neuromyelitis Optica Spectrum Disorder (NMOSD). She took the initiative to learn how to advocate by taking Patients Rising’s Advocacy Masterclass, learning about key issues through NORD’s Rare Action Network, and getting involved with Everylife Foundation for Rare Diseases.
Leah shares, “Thank you for the opportunity to speak on the ‘Talking About Advocacy’ panel last month! It was an honor and a privilege to share my experiences and insights on how we can empower individuals to take action to get involved and make their voices heard. I believe collaboration between patient communities such as Patients Rising, the National Organization of Rare Disorders (NORD), and the EveryLife Foundation for Rare Diseases and advocacy organizations like the SRNA is key to driving meaningful change.”
“Patient advocates who bring their concerns to lawmakers, either virtually on in person on the Hill or in State offices, have the best chance of having the biggest impact on health policies.” said Jim, “That is exactly why part of Patients Rising’s mission is to offer advocate training to anyone who wants it.”
Also foundational to legislative advocacy is the ability to vote. The representatives we elect to office vote on policies that change and impact the lives of those with rare diseases. It is important to make your voice heard through elections, and Vot-ER is striving to make the ability to vote available for everyone.
Vot-ER is a nonpartisan, nonprofit organization working to integrate civic engagement into healthcare. It equips healthcare professionals with free voter registration badges that have a QR code on the front. People who are hospitalized or visiting with a healthcare professional can scan this QR code, which links to a nonpartisan voter registration platform called TurboVote, which vets for eligibility and then allows patients to register to vote, request a mail-in ballot, or learn about upcoming elections on the platform.
Take action:
- If you haven’t registered to vote and would like to, or are unaware of your registration status, check out TurboVote. Your voice can create change.
- Join the waitlist for the January Legislative Advocacy Masterclass, which will give you access to Patients Rising’s online community and help you build your advocacy skills.
