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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
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1) Visit RareVoiceAwards.org 2) Review the 2021 RareVoice categories 3) Nominate an advocate who gave rare disease patients a voice on Capitol Hill and in state government in 2020 and 2021. 4) Submit! The RareVoice Awards recipients are chosen by a committee from nominations received from the rare disease community. Nominations close August 27th, 2021 Federal Advocacy – Congressional Staff Honors congressional staffers who have worked to create and enact policies for the rare disease community Federal Advocacy – Patient/Organization Honors advocates or organizations that have worked to create and pass federal legislation State Advocacy – State Legislator Honors state legislators who have worked to create and enact policies for the rare disease community State Advocacy – Patient/Organization Honors advocates or organizations that have worked to create and pass state legislation Federal or State Advocacy by a Teenager Honors teen advocates that have advocated for state or federal legislation Diversity Empowerment - Patient/Organization Honors advocates or organizations that empowered diverse voices in advocacy Artist-to-Advocate Honors individuals who have utilized their artwork to advocate for federal or state legislation For information about sponsorship, please contact Elissa Taylor, etaylor@everylifefoundation.org EveryLife Foundation For Rare Diseases 1012 14th Street, NW, Suite 500 | Washington, District of Columbia 20005 202-697-7273 | info@everylifefoundation.org
