The International 22q11.2 Foundation mission is to improve the quality of life for indivials affected by the 22q11.2 differences through family and professional partnerships. Over the last twenty years, the foundation has been successful helping thousands of families through creating awareness days, building a website, supporting research, and engaging with other support groups to… Continue Reading Information and Support [...]
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Information and Support
ADAA’s promise is to raise awareness about the impact of mental health on physical health. We work to find new treatments, and one day prevent and cure anxiety, depression, OCD, PTSD, and co-occurring disorders. Anxiety and Depression Association of America (ADAA) 14 – 18, 19 – 22, 23 – 59, 60 + Silver Spring… Continue Reading Information and Support [...]
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Provides understanding and moral support for family members and anyone who has the diagnosis. Offers conferences, meetings, studies, online forum, and information in English and Spanish. Arthrogryposis Multiplex Congenita Support, Inc. Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 +… Continue Reading Information and Support [...]
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Support and networking for families of kids with Batten Disease. Children and adults with Batten disease have inherited genetic material from their parents that may take some years to come to bear in their everyday lives. And when it does, families are often in shock when they learn how a normal child or adult… Continue Reading Information and Support [...]
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Caregiver Action Network (CAN) is the nation’s leading family caregiver organization. We work to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children… Continue Reading Information and Support [...]
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Empowers and gives hope to individuals and families affected by facial differences by addressing medical, financial, psychosocial, emotional, and educational needs. CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. Children’s Craniofacial Association Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18 Dallas Annie… Continue Reading Information and Support [...]
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Online support group for all disorders related to Chromosome 22. Website offers basic information on chromosome 22 disorders, and ways to connect with other members on social media platforms. Hosts periodic family events. Chromosome 22 Central Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22,… Continue Reading Information and Support [...]
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This nonprofit organization links families to resources and hosts an annual event for Monosomy 9P, otherwise known as Alfi’s Syndrome or 9P-, a rare chromosome anomaly. Chromosome 9p Minus Network Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Baton… Continue Reading Information and Support [...]
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Offers informational activities and works to increase awareness of the congenital birth defect Dandy-Walker. One in 10,000 children is born with Dandy-Walker Malformation, a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. Dandy-Walker is often associated with other conditions such as hydrocephalus, seizures, mobility issues, developmental delays, other central nervous… Continue Reading Information and Support [...]
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Promotes research, awareness, support to individuals with Dravet syndrome and related epilepsies. Offers grants for patients with Dravet syndrome for durable medical goods and educational devices. Dravet Syndrome Foundation, Inc. Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Cherry… Continue Reading Information and Support [...]
