Keep your face to the sunshine and you cannot see the shadow, it's what sunflowers do.
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 firstname.lastname@example.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 email@example.com. To learn more about WhatsApp, click here.
MALAN SYNDROME FOUNDATION INFORMATION CARD- PRINTABLE
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