Volunteer to Lead Upcoming Alabama Rare Events

Apply to be the leader for the 2020 Rare Disease Day State House Event

Responsibilities include working closely with the Director of Alabama Rare, planning the activities of the day, speakers, food, and coordinating social media announcements, and advertising for the event to state legislators and the larger rare disease community. The time commitment is ~2-4 hours a week for two months between February 1-March 30.

Apply to be a leader for the 2020 Rare Disease Day Symposium hosted with UAB and Children’s of Alabama

Responsibilities include working closely with the Director of Alabama Rare to help market the symposium, share the event on social media, and plan logistics for day of. Additional responsibilities include leading a “day of” symposium team to manage day of logistics and volunteers. Must be able to attend the symposium February 21-22, 2020.

Apply to be a leader for the February 2020 Birmingham Marathon Fundraiser

Responsibilities include leading the fundraising campaign for Alabama Rare through the Birmingham Bell Center Marathon. Find runners to run on behalf of Alabama Rare and coach the team on how to post on social media and the marathon page in order to raise money while training. And share the event, profiles of runners and their efforts on social media.

Apply to be a Member of the Alabama Rare Disease Advisory Council

Current open spots on the rare disease advisory council include Patient/Caregiver representatives from Congressional Districts 1, 2, 3, 5, or 7, who resides in the district, and who represents an IRS-established non-profit rare disease foundation. If interested, please email alabamarare@gmail.com your resume, and a paragraph stating your interest to serve on the council, and your ability to serve for 3 years. Resume and statement of interest will be sent to Governor Ivey’s appointments committee who will decide the appointment if deemed appropriate.

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