Support Group

Facebook:
Spina Bifida Parents Group
United By Spina Bifida
Spina Bifida Support Group
Rolling With Spina Bifida
Bowel Management for Spina Bifida
Women Only With Spina Bifida

Semi-lobar holoprosencephaly

Radiopaedia: https://radiopaedia.org/articles/semilobar-holoprosencephaly-2

Support Groups

Facebook:
Sanfilippo Syndrome Support Group
Parents of Sanfilippo Syndrome
Sanfilippo syndrome / MPS III

The Isabel Jurado Foundation

Website: http://www.isabelfoundation.org/

Abby Grace Foundation

Website: https://abbygracefoundation.org/

Sanfilippo Children’s Foundation

Website: https://www.sanfilippo.org.au/

Team Sanfilippo Foundation

Website: http://teamsanfilippo.org/

Cure Sanfilippo Foundation

Website: https://curesff.org/

Jonah’s Just Begun

Website: http://jonahsjustbegun.org/

Rhizomelic Chondrodysplasia Punctata (RCDP)

Rhizo Kids: http://rhizokids.com/
Genetics Home Reference: https://ghr.nlm.nih.gov/condition/rhizomelic-chondrodysplasia-punctata

Support Groups for Rhizomelic Chondrodysplasia Puncta

Facebook:
RCDP/ Rhizomelic Chondrodysplasia Punctata

Support Group for Reye’s syndrome

Facebook:
REYE’S syndrome

National Reye’s Syndrome

National Reye’s Syndrome Foundation: http://www.reyessyndrome.org/
National Organization for Rare Disorders: https://rarediseases.org/organizations/national-reyes-syndrome-foundation-inc/

International Prader-Willi syndrome Organization

Website: https://www.ipwso.org/

Prader-Willi syndrome Association

Website: https://www.pwsausa.org/

Foundation for Prader-Willi Research

Website: https://www.fpwr.org/

Support Groups

Facebook:
Prader Willi Syndrome Open Forum
Living life With Prader Willi Syndrome
Prader Willi Syndrome World
Living Well With Prader-Willi Syndrome
Prader-Willi Support

Support Groups for PPP2R5D

Facebook:
PPP2R5D Families
PPP2R5D: Simons VIP Connect Support
Ppp2r5 Gene Variation

PPP2R5D

Genetics Home Reference: https://ghr.nlm.nih.gov/gene/PPP2R5D#conditions
Jordan’s Guardian Angels: http://jordansguardianangels.org/

Support Groups for Potocki-Shaffer syndrome

Facebook:
Potocki Shaffer Syndrome Family Page
Potocki Shaffer Syndrome Family Group

Potocki-Shaffer syndrome

Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/9762/potocki-shaffer-syndrome
Potocki-Shaffer syndrome: http://www.potockishaffersyndrome.org/

Support Groups

Facebook:
Polymicrogyria (PMG) Support
PMG Awareness Organization’s GROUP Page (Polymicrogyria)
Polymicrogyria Support Page
Families Affected by Polymicrogyria

Blog:
Chiaras Journey

PMG Awareness

Website: http://pmgawareness.org/

Support Groups for Pierre Robin Sequence

Facebook:
Pierre Robin Sequence
Pierre Robin Sequence Support, Awareness & Research
Pierre Robin Sequence Foundation
Pierre Robin Sequence – Speech Challenges