2021 Virtual Rare Disease Symposium

A New Age of Rare Disease Advocacy & Coping

Saturday, FEBRUARY 27

8:00 AM - 1:30 PM CST

The Saturday session of the Symposium is catered to individuals with rare diseases and their family members. Everyone is welcome to attend. This year's theme is a New Age of Rare Disease Advocacy and Coping. As a result, we are focusing on coping as an individual, family, community, and state through unprecedented times with a rare disease. See the full agenda and registration information below.

 Saturday’s Agenda

8 am – 9 am – Introductions and Updates

  • Welcome – Swapna Kakani, Director of Alabama Rare

  • COVID19 Update - Dr. Paul Goepfert 

    • Paul Goepfert, MD, Director of Alabama Vaccine Research Clinic

    • Nathaniel Erdmann, MD, Assistant Professor, UAB Division of Infectious Diseases

  • The Staging Transition for Every Patient (STEP) Program - Dr. Carlie Stein Sommerville

    • Carlie Stein Somerville, MD, Medical Director of UAB STEP Program

9 am – 10:15 am – Coping as an Individual and Family in this New Age

  • Panel Moderated by Cristina Casanova Might

    • Cristina Casanova Might, MBA - Rare Disease Advocate

  • Living with Sickle Cell Disease - Jasmine Hightower

    • Jasmine Hightower, MSW – Sickle Cell Advocate

  • Caring for a Child with a Rare Disease – Leah Deason

    • Leah Deason – Parent Advocate of Ozzie Deason

  • In Sickness and In Health – Dr. Josh Novak

    • Josh Novak, PhD, LMFT, Auburn Therapy Associates

  • My Sibling has special needs – Dr. Stephanie Stoll

    • Stephanie Stoll, PhD, BCBA-D, Behavioral Pediatric Institute of Alabama

10:15 am – 10:30 am – Break

10:30 am – 11 am – Advocating for School & Work Accommodations

  • IEP Accommodations during COVID19 – Craig Thompson

    • Craig Thompson, Special Education Teacher, Auburn City Schools

  • ADA Accommodations at work – Dr. Julie Hill

    • Julie Hill, PhD, NCC, CRC, Auburn University 

11 am – 12 pm – The Power of Community

  • Panel Moderated by Swapna Kakani

    • Swapna Kakani MPH, Rare Disease Advocate & Director of Alabama Rare

  • Building a Community on Social Media – Jessica Davenport

    • Jessica Davenport, Founder of Kruzn for a Kure, Parent Advocate with SIOD

  • Telling Your Story and Connecting with Community Virtually – Melissa Hogan, J.D.

    • Melissa Hogan, Founder of Project Alive, Parent of Son with MPS II (Hunter Syndrome)

12 pm – 12:30 pm – Break

12:30 – 1:30 pm – The Importance of Legislative Advocacy

  • Panel Moderated by Brooke Thomas

  • Brooke Thomas, Parent Advocate, Director of Development & Programs Alabama Rare

  • Senator Jim McClendon, Chair of the Alabama State Senate Health Committee

  • Andrew Burnett, Legislative Assistant for Alabama Senator Richard Shelby