Jack Johnson Received 2018 Patient Advocate Leader (PAL) Award
Each year, WORLDSymposium recognizes one individual for patient advocacy leadership in the field of lysosomal disease. The 2018 Patient Advocate Leader (PAL) award will be presented to Jack Johnson, founder of the Fabry Support & Information Group.
Jack is a founding member and Executive Director of the Fabry Support & Information Group (FSIG) in the United States, and is also a founding member and Vice President and Board Member of the Fabry International Network (FIN). It is the mission of the Fabry Support & Information Group to provide the Fabry community and the general public with information, advocacy, education, and compassionate support to improve the quality of life and the quality of care for Fabry patients and family members. Jack’s active role in the Fabry community on a national and international level has helped not only increase awareness for Fabry disease, but also has directly benefitted numerous people who have been diagnosed with Fabry disease. Jack is able to bring his own experiences as a Fabry patient to his international advocacy work. Jack is a tireless advocate, and continues to champion patient meetings, fundraisers, and awareness activities for people affected by Fabry disease.
WORLDSymposium honored Jack with the 2018 Patient Advocate Leader Award on Wednesday, February 7, 2018 at 7:45 AM prior to the start of the Translational Research presentations at WORLDSymposium 2018.