Legislative Conference Agenda Continued

Networking Lunch

12:45 – 1:30 pm Atrium

We encourage families to eat with their state team. Look at the poster board to find the location of your state meeting.

Preparing for Successful Meetings*

1:30 – 2:30 pm

Atrium Hall & via Livestream. Teams may utilize Atrium Ballroom A during the breakout time if extra room is needed.

*Mandatory for advocates participating in Hill Day (family room will be closed at this time). Advocates receive information on their Hill meetings and scheduled and strategize with their teams to make the most of their time on Capitol Hill.

• Katelyn Laws, EveryLife Foundation for Rare Diseases

Snack Break

2:30 – 3:00 pm Atrium

#RAREis Scholarship Recipient Alumni Gathering

2:45 – 3:00 pm Ballroom B, Invitation only

Breakout Sessions

3:00 – 3:45 pm

Track 1: Deep Dive Policy Ask #3: The BENEFIT Act

Atrium Hall and via Livestream

• Moderator: Jamie Sullivan, EveryLife Foundation for Rare Diseases

• Lauren Sanford, Parent Project Muscular Dystrophy

• Brian Denger, Rare disease advocate

• Ron Bartek, Friedreich’s Ataxia Research Alliance (FARA)

Track 2: Advocacy for Young Adults

Atrium Ballroom B

This session is for young adults (ages 16-30) to learn more about the YARR community legislative ask.

• Moderator: Courtney Felle, EveryLife Foundation for Rare Diseases

• Alexis Levine, Young Adult Rare Representative

• Kyle Underwood, Young Adult Rare Representative

Social Media Lounge

Did you know, it only takes about 30 social media posts about an issue to get a legislator’s attention? Stop by our social media lounge to meet with digital leaders and discuss social media opportunities, ways to get the attention of legislators and 1:1 tutorials and information about best practices.

All Day: Brenda Colmenares: Social Media 101: Hashtags, Handles and Tracking Your Impact

8:30– 9:15 a.m.: Ella Balasa: A Deep Dive on Instagram and LinkedIn

12:45 – 1:30 p.m.: Jonathan Cappiello: So, You Want to Start a Rare Disease Podcast?

2:30 – 3:00 p.m.: Abbey Hauser: Building Your Advocacy Brand