genetic conditions, the Genetic Alliance has a searchable database of diseases and support groups.
Later in their journey, families can share their stories, contact legislators, and get involved in advocacy. The Every Life Foundation has a section on the study website on how to submit personal stories, infographics, the full report, and links to contact their representatives. Doing this will help raise awareness and create systemic change for all families affected by rare disorders. •
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality ForumPediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in two academic journals (pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (epmagazine.com) Archives June 2022.
RAISING AWARENESS : RARE DISEASES RESOURCES
EVERY LIFE FOUNDATION
https://everylifefoundation.org/delayed-diagnosis-study
NATIONAL ORGANIZATION FOR RARE DISORDERS
NATIONAL INSTITUTES OF HEALTH
https://rarediseases.info.nih.gov
GENETIC ALLIANCE
https://geneticalliance.org/disease-infosearch
