Providing resources, legal connections, and workshops to help tamilies advocate for fair treatment and accommodations.
Read MoreIncreasing public and professional awareness through targeted campaigns and training about ultra-rare conditions.
Read MoreEquipping families with guides, toolkits, and workshops to confidently advocate for their child's needs in all settings.
Read MoreOffering respite, peer support, and family events to provide relief and community for caregivers and families.
Read MoreConnecting families to specialized medical professionals, telehealth options, and essential therapy resources.
Read MoreResearch Funding Supporting groundbreaking research to develop better diagnostics, treatments, and care for children with ultra-rare genetic conditions.
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