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Tieni la faccia al sole e non puoi vedere l'ombra, è quello che fanno i girasoli.
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NEWLY DIAGNOSED FAMILIES
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.
Understanding Your Child's Genetic Report
A one-page reference guide can be downloaded here. A webinar on how to interpret your child's NFIX gene variant can be viewed here.
NORD Disease Report- Malan Syndrome
The National Organization for Rare Disorders (NORD) provides non-technical reports on rare disorders. The Malan syndrome report in English can be viewed here. The report is also available in Spanish and Portuguese.
Unique Guide- Malan Syndrome (published November 2024)
Unique is a UK nonprofit and provides family-friendly information guides on rare chromosome and gene disorders. The Malan syndrome guide can be viewed here.
Prep Guides: Parent Preparation for Specialists Visits (*New resource, 2025)
This resource is designed to support parents/caregivers in preparing for medical appointments. Each guide includes frequently asked questions to consider before your appointment, relevant publications that your specialist may find helpful, and important points to consider when discussing Malan syndrome and related health needs.
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GRUPPO DI SOSTEGNO AI GENITORI
Questo gruppo di supporto è destinato ai genitori (o ai caregiver primari) di individui con una diagnosi confermata di sindrome di Malan. Se desideri essere aggiunto a questo gruppo WhatsApp secure, inviaci un'e-mail a info@malansyndrome.org. Per saperne di più su WhatsApp, fare clic suqui.
SCHEDA INFORMATIVA FONDAZIONE SINDROME DI MALAN - STAMPABILE
Clicqui per stampare.
GUIDA PROFESSIONALE SINDROME DI MALAN (TRIFOLD) - STAMPABILE
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.
UTILI RISORSE ONLINE
