Rare advocates are arranged into meetings by state and meet with Senate and House members alike. Lexi and I represented New York and California, and together were able to visit the offices of Senator Feinstein (CA), Senator Padilla (CA), Representative Matsui (CA), Representative Schiff (CA), Senator Gillibrand (NY), Senator Schumer (NY), and Representative Garbarino (NY).

If the thought of attending the rare disease week panels and advocating seems overwhelming to you, I understand. Just four years ago I attended my first rare disease week solo, having some concerns about picking up the terminology and feeling qualified to speak on behalf of our Jordan’s Syndrome community. In those moments I recall the words of our podcast host Christina Janes, “Sometimes it’s scary to try something new- do it anyway.” If after that I’m still in doubt, I think of our families, and the systemic challenges they face every day. They did not sign up to be advocates but have assumed the role since the day their child was born.

Luckily, there is a lot of support given to advocates along the way. The first two days of rare disease week serve to understand government agencies, the next day is a deep dive into every legislative ask and breakout rooms to teach you how to share your story. (Lexi was a panelist for the Young Adult Rare Representatives- watch her presentation here.) On the day of your hill meetings, Rare Disease Legislative Advocates appoint one seasoned advocate to attend each meeting, so that no one must attend on their own.

For me, the most touching and empowering part of the week is witnessing the connection between the policy advisors and the advocates. Policy advisors have numerous meetings with constituents daily, but I can’t imagine all are as important or moving as the meetings I attended. Rare disease does not discriminate between gender, culture, or political party. To bear witness to people who have nothing and yet everything in common, coming together to share their story in the name of advancing the rare community is powerful.

In one of my Senate meetings a father was educating a policy advisor on The BENEFIT Act,
(This legislation would require FDA to provide a description of how patient-experience data was considered in its risk-benefit framework. Patient experience data can include patient reported outcomes, testimonials, patient preference data, and natural history studies.)

When they locked eyes as the father said, “I used to lie awake worrying if the science would ever be advanced enough to help my son. Now, I don’t worry about the science, we know that’s there. I worry about whether a treatment will be approved in time. Please pass this sentiment along to the Senator, so I don’t have to worry about what will happen to my son when I leave this earth.”

If you think sharing your story isn’t enough to make a difference, that it won’t matter- I promise you that it does.

Are you ready to stand up and make a difference for individuals living with rare disease?  At Jordan’s Guardian Angels we coordinate an Advocacy Subcommittee, have an advocacy one sheet to share with your representatives, and connections to many rare disease warriors eager to make your voice heard. Every voice matters. I can’t wait to hear yours.
 
Contact Brittany at bcardoza@jordansguardianangels.org.

Find legislative asks and recordings of Rare Disease week here.