RARE Patient Advocacy Summit

Join us for a Virtual RDLA Regional Meet and Greet Session!

MaryO Interviews, Meetings and Conferences ,

Meet Rare Disease Advocates from your state and region, get to know our YARR members, and win prizes!

Each session is arranged based on where you live and hosted by RDLA in partnership with the Young Adult Representatives of RDLA (YARR) and State Organization Leaders.

This is a fun opportunity for the rare disease community in each region and state to get together before Rare Disease Week to foster community and camaraderie. Whether you are new or a veteran of the rare disease community, there will be something for everyone. We want to take time to get together socially before the excitement of Rare Disease Week! See below for details on the virtual session in YOUR region.

Please note that you will be prompted to select which Meet and Greet session below you would like to attend once you reach the checkout page. One session per attendee. Please choose the session with the state from where you are located. Please note the time zone!

Virtual Regional Meet and Greet Sessions:

January 11 at 5-6 pm PST: AK, AZ, CA, CO, HI, ID, MT, NV, NM, OR, UT, WA, WY, U.S. Territories

January 11 at 6-7 pm CST: AR, IL, IN, IA, KS, MI, MN, MO, NE, ND, OK, SD, WI

January 13 at 6-7 pm CST: AL, FL, GA, KY, LA, MS, OH, SC, TN, TX, WV

January 13 at 6-7 pm EST: CT, DC, DE, ME, MD, MA, NH, NJ, NY, NC, PA, RI, VT, VA

No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates.

RAFFLE DETAILS: To be entered to win the raffle, registration AND attendance to one Regional Meet and Greet 2022 session is required. Only one winner per session. No repeat winners for attending multiple sessions.

This is NOT registration for Rare Disease Week. If you have not registered for Rare Disease Week and would like to please click here.

For more information or for any questions, please contact Rachelle Raudes, RDLA State Advocacy Fellow at rraudes@everylifefoundation.org or visit our State Advocacy Hub.
Register Here for a Virtual Meet and Greet Session
You can find the schedule of events for Virtual Rare Disease Week below.

Virtual Rare Disease Week on Capitol Hill 2022 Schedule of Events

Tuesday, February 22

1:00-2:00 pm ET: Rare Disease Congressional Caucus Briefing

5:30 -7:30 pm ET: Rare Disease Documentary Screening

Wednesday, February 23

1:00-5:00 pm ET: Legislative Conference Day 1

5:00 pm ET: Virtual Rare Artist Gallery Opens

Thursday, February 24

1:00-5:00 pm ET: Legislative Conference Day 2

5:15-6:00 pm ET: YARR Meetup

Friday, February 25

12:00-1:00 pm ET: Office Hours

Monday, February 28

Rare Disease Day at NIH

Tuesday, March 1

Meetings with House of Representatives

Wednesday, March 2

Meeting with Senators

🎤 RARE Patient Advocacy Summit

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Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies.

Join us for a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Here you’ll have the opportunity to connect and engage with others in the rare disease community, while experiencing the sense of community and belonging we’ve missed so much. Gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies you can implement immediately to accelerate change.

The 2021 RARE Patient Advocacy Summit is a virtual event, happening Monday, September 27, 2021 through Wednesday, September 29, 2021.

2021 RARE Patient Advocacy Summit virtual registration is now open!

Register here: https://web.cvent.com/event/289bd182-abf4-49b0-90be-c2320566c276/regProcessStep1

Speakers: https://globalgenes.org/summit-featured-speakers/

Interested in becoming a speaker? Fill out the speaker inquiry form here.