Schedule
Most meeting times are 7:00 to 8:00 PM Eastern Time. Watch for additional meetings to be added to this schedule throughout the year.
Most meeting times are 7:00 to 8:00 PM Eastern Time. Watch for additional meetings to be added to this schedule throughout the year.
A week or two after meetings are held, meeting recordings can be found on the Archives tab.Â
A week or two after meetings are held, meeting recordings can be found on the Archives tab.Â
Primary Financial Assistance Programs for Families with Fabry Disease
Primary Financial Assistance Programs for Families with Fabry Disease
PAN
Foundation
PAN
Foundation
OCT 23, 2023
OCT 23, 2023
With Guest Speaker Amy Niles
The Assistance
Fund
The Assistance
Fund
NOV 6, 2023
NOV 6, 2023
With Guest Speaker Stephanie Marshall
Accessia
Health
Accessia
Health
NOV 20, 2023
NOV 20, 2023
With Guest Speaker Jennifer Noonan
American Kidney Fund
American Kidney Fund
DEC 11, 2023
DEC 11, 2023
With Guest Speaker Michael Spigler
Mental Health and Family Resources
Mental Health and Family Resources
Psychosocial Aspects of Living with Fabry Disease
Psychosocial Aspects of Living with Fabry Disease
JAN 17, 2024
JAN 17, 2024
With Guest Speaker Stacey Feuer PSyD from the Institute for Personal Development (Duly Health and Care)
Mindfully Rare Resources for Mental Health Support
Mindfully Rare Resources for Mental Health Support
JAN 22, 2024
JAN 22, 2024
With Guest Speakers Chelsea Kavanaugh and Christina Bott from the National Alliance on Mental Illness (NAMI)
NFDF Family Assistance Program with KGA
NFDF Family Assistance Program with KGA
FEB 12, 2024
FEB 12, 2024
With Guest Speaker Susan Kapopoulos from the Kathleen Greer Associates
Industry Care Programs and Useful Resources
Industry Care Programs and Useful Resources
Sanofi Programs and Resources
Sanofi Programs and Resources
FEB 26, 2024
FEB 26, 2024
With Guest Speaker Joanie Vigovich from Sanofi
Chiesi Programs and Resources
Chiesi Programs and Resources
MAR 11, 2024
MAR 11, 2024
With Guest Speaker Christie Hussa from Chiesi
Amicus Programs and Resources
Amicus Programs and Resources
MAR 25, 2024
MAR 25, 2024
With Guest Speaker Susan Flynn from Amicus
Additional Webinar Sessions
Additional Webinar Sessions
2024 Fabry Family Conference & Camp Information Session
2024 Fabry Family Conference & Camp Information Session
APR 08, 2024
APR 08, 2024
With co-hosts Jerry Walter and Casey McKenna from the NFDF
National Organization for Rare Disorders (NORD)
National Organization for Rare Disorders (NORD)
APR 29, 2023
APR 29, 2023
With Guest Speaker Jill Pollander