Rare disease advocacy: 5 tips for making your voice heard

Living with a rare disease that few people know about or understand can be challenging. Often, individuals living with rare diseases have to do a lot of educating — of family members, friends and others. This skill can be readily transferred to advocacy with policymakers.

It is often an uphill battle when advocating for a rare disease: there is little public awareness, even less research and funding and fewer people with a rare disease who can speak out and engage in advocacy.

In a webinar hosted by the American Kidney Fund (AKF), AKF Ambassador Angeles Herrera discussed her experience with a rare kidney disease and why engaging in advocacy is so important in effecting policy changes that can help people living with a rare condition. She joined me in offering advice for patients, family members and loved ones who are interested in advocating for their rare disease.

That advice can be distilled into five tips to help you advocate for a rare disease:

1. Be persistent. Because there are fewer people with rare diseases than more common diseases, it can be difficult to get your voice heard and for people to take notice. It is important that rare disease advocates be persistent in their advocacy efforts to make their voices louder. Meet with legislators and their staff to educate them and share your experience. Thank lawmakers for their support when they champion an issue you care about. Follow up with staffers. Maintain contact with offices to educate elected officials on a continuous and ongoing basis.
2. Raise awareness and communicate with lawmakers in different ways. To get your message out there and heard, as a rare disease advocate you should engage in all forms of communication with elected officials — in-person meetings, phone calls, emails, letters and social media platforms such as Twitter and Facebook.
3. Connect with other people with rare diseases. Through internet searches, social media and engaging with organizations like AKF, you can connect with others who have your disease or other rare conditions. Together, you can coordinate and organize advocacy activities, and have a collective voice that amplifies your message.
4. Tell your story. Sharing your experience with a rare disease and explaining how your life has been impacted by it is one of the most effective ways to highlight the need for a specific policy change and more awareness. Your personal story can drive home the point that people with a rare disease deserve the same attention, research and resources as others.
5. Remember: elected officials need to hear from you. If you are new to patient advocacy, it can be daunting. But lawmakers and their staff need to hear from you. You have a story to tell and you have the expertise to educate them about your disease and what it is really like to live with it. By engaging in advocacy with AKF, you can be the person who sparks the next piece of legislation that improves the lives of people living with rare diseases.

AKF's webinar Advocating for a rare disease is available for on-demand viewing. The webinar was made possible by an educational grant from Alexion Pharmaceuticals.