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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Information and Support
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 [...]
Information and Support
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 [...]
Information and Support
Empowers and gives hope to children and families affected by facial differences. We address medical, financial, psychosocial, emotional, and educational needs. We have resources and support info for cranio-facial differences. Children’s Craniofacial Association Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18 Dallas Annie Reeves contactcca@ccakids.org 214-570-9099 800-535-3643… 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 [...]
Information and Support
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 [...]
Information and Support
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 [...]
Information and Support
Offers information and medical research. We have a national family conference, on ichthyosis and related disorders. Also offers financial assistance. Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Lansdale Lisa… Continue Reading Information and Support [...]
Information and Support
FACES assists families with travel to major medical centers. Specialized craniofacial teams provide the safest and most advanced treatment for building a face and skull. FACES, along with Face Equality International, of which FACES is a founding member, provides information and education to increase public understanding of craniofacial differences. FACES provides free and unbiased… Continue Reading Information and Support [...]
Information and Support
The International Rett Syndrome Foundation (IRSF) was established in July 2007 with a mission to fund research for treatments and a cure for Rett syndrome. We can enhance the overall quality of life for those living with Rett syndrome. IRSF coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome.… Continue Reading Information and Support [...]
