Website Info & Support Groups (outside Facebook)

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    Below are links to various support groups I have found around the web which focus on ABS and/or limb differences and shared as a resource collection only. UB and its author are not affiliated with these sites nor responsible for anything posted on them. I have copied tidbits from each site to give you an idea of what each is about (no copywrite issues intended, credit to each site author) as indicated in quotation marks.

    American Association of People with Disabilities “The American Association of People with Disabilities is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.”

    American Society for Surgery of the Hand: Very general information on some forms of congenital hand anomalies.

    Amniotic Band SyndromeAbout this website: In 1993 when Evan was born we had never heard of Amniotic Band Syndrome. The Internet was just a baby at that time too and I didn’t know where to find the information I needed. I’ve learned a lot about ABS over the years so I developed this website to share this with others.

    Amputee Coalition: Where can you turn when you have questions about limb loss? “Here at the resource center we provide comprehensive information and resources free of charge. All of the information that we provide is reviewed by the Coalition’s medical/scientific advisory committee of experts in the field of limb loss so you can count on the accuracy of the information.”

    DysNet: “DysNet is the global network connecting anyone who is personally or professionally affected by congenital limb deficiency. The site is inclusive, communicative and collaborative. This is the place where you can find information, contribute your own thoughts and ideas and join the conversation.”

    Helping Hands Group: “The philosophy of Helping Hands Foundation is to provide parent-to-parent support and information. Often times, a phone call or email is all it takes to put parents at ease in those early days as they deals with their child’s upper limb difference. We are here to listen, answer questions and share our own experiences. Additionally, we offer two (2) family outings each year for the entire family to enjoy. A special bond often develops between parents, affected children and their siblings when families get together to share ideas and experiences. These social events offer an informal atmosphere for parents to meet each other and for children to interact with one another. In addition, relevant topics and issues are addressed through our website and speakers.

    International Child Amputee Network (I-CAN): “Bill Baughn and his wife, Joyce, a bilateral below elbow amputee since age six, established I-CAN (International Child Amputee Network) and an Internet mailing list to provide information and support contacts to children with absent or underdeveloped limbs and their parents.”

    Little Hand Big Heart: “Making People Aware of Amniotic Band Syndrome One Little Hand at a Time.”

    Lucky Fin Project: Celebrating the wonderfully made one “Lucky Fin” at a time.

    On the Other Hand… I Have a Thumb: “My name is Laura Faye Clubok, and I have created this website to provide information, support, and suggestions for parents, relatives, and friends of children with hand anomalies. I am a registered and licensed occupational therapist (OTR/L), and a certified weight trainer who also has a congenital hand anomaly. I earned my undergraduate degree at Harvard University and my master’s degree in occupational therapy at the Boston School of Occupational Therapy at Tufts University. In my private practice, On The Other Hand Therapy, I work with both children with special needs and typically-developing children. My choice of career as an occupational therapist stemmed from my own experiences growing up without fingers on my left hand. I hope that you find this site helpful, realistic, and inspirational.”

    Sammy’s Friends Yahoo Group: “Welcome to Sammy’s Friends! We are a support group created for the support of those affected by congenital limb differences. Many diagnosises are included in this description. They include, Amniotic Band Syndrome (ABS), Vascular Incident,traverse limb deficiency, congenital amputee, syndactly, symbrachydactyly, and many more.”

    Super Hands: “Hope and Encouragement for Kids with ABS and Upper Limb Differences.”

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