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Keep your face to the sunshine and you cannot see the shadow, it's what sunflowers do.
-Helen Keller
NEWLY DIAGNOSED FAMILY WELCOME PACKET
The Newly Diagnosed Family Welcome Packet contains information to help navigate the rare journey with Malan syndrome. Sections include an overview of Malan syndrome, school/therapy guidance, Medicaid waivers (US-based families) and parent education/support resources. If you would like to receive the Welcome Packet, please email us at info@malansyndrome.org.
PARENT SUPPORT GROUP
This support group is intended for parents (or primary caregivers) of individuals with a confirmed diagnosis of Malan syndrome. If you would like to be added to this secure WhatsApp group, please email us at info@malansyndrome.org. To learn more about WhatsApp, click here.
MALAN SYNDROME FOUNDATION INFORMATION CARD- PRINTABLE
Click here to print.
MALAN SYNDROME PROFESSIONAL GUIDE- PRINTABLE
PARENT SOCIAL HOURS
These virtual social hours provide an opportunity to meet other parents and caregivers with children affected by Malan syndrome. Chat, vent, discuss child development, parenting concerns and exchange ideas in a welcoming and safe space.
Monthly Zoom Social:
Parents and Caregivers
Connect with others on a similar journey!
Join us:
April 30th at 1PM ET
Hora Social Para Padres de Habla Hispana
Conectarse con otras personas en un viaje similar!
Únete a nosotros:
13 de abril a las 16h ET
HELPFUL ONLINE RESOURCES
