Throughout the month of August, legislators will be back in their home districts during Congress’ Summer Recess. This allows advocates a chance to meet with their representatives without having to travel to Capitol Hill. For those affected by rare diseases – either personally or as a caretaker/loved one – this can be a great opportunity to build a relationship with your local representatives and educate them on the pressing issue that face the rare disease and sarcoidosis communities.

Many sarcoidosis advocates have connected with their local legislators. In addition to our FSR Patient Ambassadors attending a day of meetings on Capitol Hill this February, we’ve also had FSR representation at the in-district lobbying days. Read the story of FSR Ambassador Sheron visiting her reps in Michigan and sharing the tips she learned through the Rare Disease Legislative Advocates (RDLA.)

While registration for the Rare Disease Legislative Advocates (RDLA) event is no longer open, advocates are still encouraged to schedule meeting with their representatives – find yours here!

We’ve included some resources below that can be helpful if you’re meeting with a legislator for the first time. Remember, you don’t need any prior background in advocacy or politics to get involved and meet with your legislators. Your story as someone who is affected by sarcoidosis is experience enough, and can be extremely compelling!

Advocacy Resources:

Global Genes Toolkit: Building Relationships with Your Representatives
This booklet walks you through the process of building a meaningful relationship with your representatives. These relationships can be especially handy when trying to get a proclamation passed for Sarcoidosis Awareness Month, or when a vote comes up that affects our community. Having a preexisting relationship with your rep’s office makes it easier to get their ear when there’s an important topic that affects you directly!

RDLA Legislative Scorecards
These scorecards indicate how your local legislator has voted in the past on issues that affect the rare disease community, and serve as a good jumping off point for conversation. Search by legislator name or zipcode!

2018 RDLA In-District Lobby Days Prebrief Slideshow
These slides are from RDLA’s webinar last year to prep their volunteers on how to make the most of their meetings with their advocates. Please note some information in the beginning of the slideshow is dated and not relevant. However, it does contain great information on how to prepare for your meetings, how to do appropriate follow-up, and the issues facing the rare community.