Helpful Links:

NORD: http://rarediseases.org/

Rare Disease Day USA: http://rarediseaseday.us/

Rare Disease Day: http://www.rarediseaseday.org/

Undiagnosed Medical Refugees: http://www.undiagnosedfilm.com/

RARE connect: https://www.rareconnect.org/en

SWAN USA: http://www.undiagnosed-usa.org/

NIH Undiagnosed Disease Program: http://rarediseases.info.nih.gov/research/pages/27/undiagnosed-diseases-program

RUN: http://rareundiagnosed.org/

Aware of Angels: http://awareofangels.org/

Autism Speaks: http://www.autismspeaks.org/

Autism Speaks Resource Guide http://www.autismspeaks.org/family-services/resource-guide

AADC Research: http://aadcresearch.org/

Career Assistance for People with Autism http://www.hloom.com/career-assistance-for-people-with-autism/

National Center for Autism Resources & Education https://www.disability.gov/resource/national-center-for-autism-resources-education-ncare/

AutismNOW Transition Planning http://autismnow.org/in-the-classroom/transition-planning-for-students/

Aquatic Therapy for Children with Autism http://www.saveonpoolsupplies.com/landing/aquatic-therapy-for-children-with-autism.aspx

Autism http://healthfinder.gov/FindServices/SearchContext.aspx?topic=81

In Need of a Diagnosis: http://www.inod.org/home0.aspx

Rare Disease Foundation: http://www.rarediseasefoundation.org/

Cord Blood Banking:  https://www.cordbloodbanking.com/

Chromosome Disorder Leaflets from Unique-They have been collecting information about specific chromosome disorders in their comprehensive offline database for nearly 25 years and since 2003 have spent many thousands of hours producing family-friendly, medically-verified, disorder-specific information leaflets. These leaflets are dynamic documents and will be updated as new information becomes available. New leaflets about other chromosome disorders will be coming on stream all the time. Web version and print versions available.  Very helpful as handouts for teachers, therapists and family members.  http://www.rarechromo.org/forum/DisordersLeaflets.asp

Chromosome Disorder Outreach, Inc. is a non–profit organization, founded, supported, and run by parents just like you. Our families live around the world and CDO provides a network of support and information through an extensive library of available up–to–date articles, detailed registry, newsletters, and a listserv that’s online 24 hours a day, every day. http://www.chromodisorder.org/CDO/

Global Genes Project: Great resource for parent support, up to date news/articles, and events:  http://globalgenes.org/blog/

Friendship Circle, Special Needs Resource: http://www.friendshipcircle.org/blog/

EURORDIS: http://www.eurordis.org/

Unique: http://www.rarechromo.org/html/home.asp

Utah Rare Disease Day Events: http://utahrare.org/

PubMed: http://www.ncbi.nlm.nih.gov/pubmed

USA

• GARD, Genetics and Rare Diseases Information Center 
• GeneReviews, University of Washington
• GeneTests, BioReference Laboratories
• Genetics Home Reference, National Library of Medicine
• Mayo Clinic, Mayo Foundation for Medical Education and Research
• MedlinePlus, National Institute of Health
• Medscape, WebMD Health Professional Network
• NINDS, National Institute of Neurological Disorders and Stroke
• Office of Rare Diseases Research, National Center for Advancing Translational Sciences
• OMIM, Online Mendelian Inheritance in Man, National Center for Biotechnology Information
• PubMed, National Library of Medicine

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Socialstyrelsen:  http://www.socialstyrelsen.se/rarediseases

1p36 Deletion Syndrome-http://www.1p36dsa.org/?gclid=COrsj-e8w70CFdKGfgodQKYA_Q

2q23.1 deletion/duplication disorders- http://2q23.org/

Angelman Syndrome- http://www.angelman.org/    &    http://www.cureangelman.org/

National Autism Association- http://nationalautismassociation.org/?gclid=CNTW2ryD87sCFc5lfgodtVoAvg

PND Association: http://pndassoc.org/index.html

PND Association: http://pndassoc.org/diseases/aadc.html

Rare Bone and joint disease network: http://www.usbji.org/?CFID=11152267&CFTOKEN=76283961&jsessionid=f030d4b203d3d8879bb42601a2d3c65d2678

Charcot-Marie-Tooth Disease- http://www.cmtausa.org/

Chromosome 22- http://www.c22c.org/22q11dup.htm   (Chromosome 22 Central supports all chromosome 22 disorders, including 22q11.2 Deletion (Velocardiofacial and DiGeorge Syndrome) 22q11 Microduplication Syndrome, Emanuel Syndrome and the 11/22 translocation, Cat Eye Syndrome, Mosaic and Complete Trisomy 22, Chromosome 22 Ring, 22q13 Deletion (Phelan-McDermid Syndrome) and many unique chromosome 22 conditions.)

Cri du Chat Syndrome-http://www.fivepminus.org/

Fragile X Syndrome http://www.fragilex.org/

Jacobsen Syndrome http://www.11qusa.org/home/

National Down Syndrome Society- http://www.ndss.org/

N-glycanase deficiency (NGLY1)  http://www.ngly1.org/

Triple X Syndrome http://www.triplo-x.org/

Trisomy 13/Patau Syndrome  http://www.livingwithtri13.org/

Trisomy 16 http://www.trisomy16.org/

Trisomy 18/Edwards Syndrome http://www.trisomy18.org/site/PageServer?pagename=homepage

Turner Syndrome-http://www.turnersyndrome.org/     http://www.turnersyndromefoundation.org/

Williams Syndrome http://www.williams-syndrome.org/

Wolf-Hirschhorn Syndrome http://wolfhirschhorn.org/