Support Groups for Lissencephaly

Facebook:
Families of Lissencephaly
Lissencephaly
Lissencephaly Network

Blog:
Malia Moore

Lissencephaly

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/lissencephaly/

Support Groups

Facebook:
limb difference makes no difference
BEAUTIFUL LIMB DIFFERENCES
Limb Difference Families
Reach – for children with upper limb difference

Never Say Never Foundation

Website: http://neversayneverfoundation.org/

Jordan Thomas Foundation

Website: https://jordanthomasfoundation.org/

International Child Amputee Network

Website: http://child-amputee.net/

Helping Hand Foundation

Website: http://helpinghandsgroup.org/

Colorado PWSA

8290 South Yukon Way
Littleton, CO 80128
Phone: (303) 973-4780
Contact: Lynette Hosler
Email: lynette@pwsaco.org
Website: http://www.pwsaco.org

Amputee Coalition

Website: http://www.amputee-coalition.org/

Prader-Willi California Foundation

514 North Prospect Avenue, #110-LL
Redondo Beach CA 90277
Phone: (310) 372-5053
Contact: Roger Goatcher
Email: info@pwcf.org
Website: http://pwcf.org

Lucky Fin Project

Website: http://www.luckyfinproject.org/

Camps

No Limits Foundation: https://nolimitsfoundation.org/
Adventure Amputee Camp: https://adventureamputeecamp.org/
Ampucamp: http://www.ampucamp.org/

Koolen-de Vries syndrome

Genetics Home Reference: https://ghr.nlm.nih.gov/condition/koolen-de-vries-syndrome

Support Groups for Koolen syndrome

Facebook:
Koolen de Vries Syndrome – 17q21.31 Microdeletion Syndrome Support Group

Center for Parent Information & Resources

Website: http://www.parentcenterhub.org/intellectual/

Learning Disabilities Association of America

Website: https://ldaamerica.org/about-us/ld-foundation/

Support Groups

Facebook:
Intellectual disability support group for parents and loved ones
Intellectual disability support group
Support for Parents of Intellectually Disabled Child Living in Group Homes

Support Groups

Facebook:
Hydrops Fetalis
Hydrops Fetalis Parents Support Group
LITTLE WAVES Hydrops Fetalis Miracle Support Group -For Parents of Miracles
Hydrops Fetalis Awareness

Support Groups

Facebook:
hydrocephalus support group
Hydrocephalus Support Group
Hydrocephalus Adult Support Group
Hydrocephalus support group

Pediatric Hydrocephalus Foundation

Website: http://www.hydrocephaluskids.org/wordpress/

National Hydrocephalus Foundation

Website: http://nhfonline.org/

Hydrocephalus Association

Website: http://www.hydroassoc.org/

FOXP2 gene deletion

Genetics Home Reference: https://ghr.nlm.nih.gov/gene/FOXP2

Epilepsy Foundation

Website: https://www.epilepsy.com/