The following links are provided so you can learn more about Trisomy and related chromosome disorders. The links, which are listed alphabetically, are for further information and support only and not an endorsement of any one organization, foundation, support group, registry, clearinghouse, agency or entity.
- Agenesis of the Corpus Collusum – ACCKIDS
An e-mail discussion group for parents, caregivers and extended family and friends that have an ACCKID in their lives.
- Anencephaly Support Foundation
A support group that consists of families who have had a baby born with anencephaly.
- Association for Children with Down Syndrome (ACDS)
Dedicated to the education and training of children and adults with Down syndrome (Trisomy 21) and other developmental disabilities.
- Association for Retarded Citizens, The Arc
The Arc is the national organization of and for people with mental retardation and related developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children.
- Choroid Plexus Cyst Organization
Choroid Plexus Cysts (CPC’s) seen in the brain during early ultrasounds are a soft marker for Trisomy 18 and other chromosome disorders. This site provides information on CPC’s and it has an active community board that is moderated by volunteers of parents who are seeking support after learning of this marker.
- Chromosome 22 Central (C22C)
A support group for chromosome 22 related disorders. C22C offers a newsletter, parent network registry, informative and interactive website, holds conferences and links families with research facilities.
- Chromosome Disorder Outreach (CDO)
A non-profit organization providing information and support for families and professionals affected by chromosome deletions, trisomies, inversions, translocations and rings.
- Disorders of Chromosome 16 Foundation (DOC16)
DOC16 provides information, education and support to families of children living with a chromosome 16 disorder and to expectant parents confronting a similar diagnosis. The Foundation also serves as a resource aiding family, friends, caregivers and medical professionals in their supportive roles.
- Easter Seals
Provides services to children and adults with disabilities and other special needs, and support to their families.
- PREGNANCY & PARENTING
Tips for parents of child/young adults with special needs, annual resource guide of organizations, products and services.
- Genetic Alliance
An international genetics coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations representing them.
- Genetic and Rare Diseases Information Center (GARD)
Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), GARD Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals and biomedical researchers.
Hope for Trisomy To fund research for Trisomy 13 & 18 and related chromosome disorders, develop programs that educate parents of children with Trisomy about options available to their child and teach them how to advocate for their child to receive all available treatment, and to create materials, literature, workshops, seminars, and conferences to educate the medical health professionals, the parents, and the public about Trisomy 13 and 18, so they have accurate and current information and resources available to them.
Living With Trisomy 13
A website which focuses on bringing the families of beautiful Trisomy 13 (Patau Syndrome) children together by sharing their stories of living and growing in love in the challenges of raising a Trisomy 13 child.
- March of Dimes
Dedicated to improving the health of babies by preventing birth defects and infant mortality. They carry out their mission through research, community services, education and advocacy to save babies’ lives. The March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birth weight.
- Michael Gerard Puharic Memorial Fund
A parent founded non-profit organization established to support, give comfort and ease the burden for parents caring for seriously ill newborns.
- Mothers United for Moral Support (MUMS)
A national Parent-to-Parent organization for parents or care providers of a child with any disability, disorder, chromosome abnormality or health condition.
- National Down Syndrome Society
Benefits people with Down syndrome (Trisomy 21) and their families through national leadership in education, research and advocacy.
- National Institutes of Health (NIH)
The NIH is one of the world’s foremost medical research centers, and the Federal focal point for medical research in the United States. The NIH, comprising 27 separate Institutes and Centers, is one of eight health agencies of the Public Health Service which, in turn, is part of the U.S. Department of Health and Human Services. Simply described, the goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.
- Rainbows Down Under
An extensive educational website focusing on Trisomy 18, Trisomy 13 and related chromosomal disorders.
- Rare Genetic Diseases in Children
An internet jump-station to sources of information on rare genetic diseases affecting children.
- Special Needs Advocate for Parents (SNAP)
Provides information, education, advocacy and referrals to families with special needs children of all ages and disabilities.
- Support Groups for Chromosomal Conditions
An extensive listing of support groups for chromosomal conditions such as Down syndrome, Trisomy 18, Trisomy 13, 11q, Trisomy 9, 4p-, cri-du-chat, deletions, inversions, duplications, translocations, ring, sex-chromosome anomalies, mosaicisms, fragile-x syndrome, other trisomy, variations, cancer cytogenetics and other cytogenetic resources
- Support Organization for Trisomy 13, 18 and Related Disorders (SOFT)
A network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, during the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision and to the notion of parent-professional relationships.
- The Chromosome 18 Registry & Research Society
A non-profit organization that helps individuals with chromosome 18 abnormalities overcome the challenges they face so they might lead happy, healthy and productive lives. They offer such services as a newsletter, annual conference, parent network and listerv as well as facilitate research into the syndromes of chromosome 18 through direct research support and supporting others to do the same.
- The Lili Claire Foundation
A non-profit organization that benefits people born with neurogenetic disorders such as Williams syndrome, Down syndrome and Autism, while providing resources and assistance to the families who love them.
- The National Organization for Rare Disorders (NORD)
A clearinghouse providing information and encouragement to rare-disease patients and their families as well as professional.
- Trisomy 18 Foundation
The Foundation sponsors the Trisomy 18 Support Online Community which provides immediate, free, internet-based access to families seeking needed information and ongoing community support to cope with the challenges associated with a prenatal or neonatal Trisomy 18 diagnosis for their child. The Online Community supports families with children who are yet to be born, newly born, deceased, and surviving at all ages.
- Trisomy On-Line Genetic & Chromosome Links
On-line support groups for those whose lives have been touched by the diagnosis of a trisomy chromosomal disorder including Trisomy 18, Trisomy 13 and many other rarer Trisomy disorders.
A comprehensive support group for rare chromosome disorders including deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, sex chromosome aneuploidy. They provide support through newsletters, online groups and other information available through their webpage.
- United Cerebral Palsy (UCP)
UCP is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, UCP’s mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.
- Williams Syndrome Association
Dedicated to enriching the lives of individuals with characteristics of Williams syndrome.
medical support/financial support/wish granting
- Disabled Children’s Relief Fund (DCFR)
A non-profit organization providing disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. Blind, Deaf, Amputees, and children with Cerebral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis, Rheumatoid Arthritis, Spina Bifida, Down syndrome and other disabilities receive assistance. DCRF focuses special attention on helping children throughout the United States that do not have adequate health insurance, especially the physically challenged.
- First Hand Foundation
A non-profit organization that assists individual children who have clinical, health-related needs and no financial safety net to cover these expenses. By focusing on the individual child, First Hand reaches children and their families who would otherwise fall through the cracks of insurance coverage and state aid. The Foundation strives to provide assistance that creates independence, rather than dependence for its recipients.
- Give Kids The World
A non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need.
- Jesica’s Hope Chest, Inc.
A foundation that assists families with medical expenses when insurance or Medicaid has been exhausted, housing costs for families who must travel for their child’s care and various other expenses associated with special needs some children may have.
- Katie Beckett Waiver/Option
This option can offer tax relief to families who are not eligible for Medicaid programs, but cannot afford the resources sometimes necessary to care for a disabled child.
- Katilin Marie Bell Foundation
A non-profit organization which supports the needs of medically and physically challenged children. The Foundation exists to increase lifestyle opportunities and quality of life for recipients by providing equipment and/or services that would not otherwise be affordable.
- Make-A-Wish Foundation
A non-profit organization that grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.
- The Air Care Alliance A nation-wide league of flying humanitarian organizations whose volunteer pilots are dedicated to community service whose volunteers perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service.
- The Morlock Foundation
To improve the lives of families whose children have a disease by mobilizing the power of a caring community, spiritual support, financial grant assistance and empowerment. The foundation assists families by providing grants, insurance negotiation, and if necessary, legal matters.
- The Spare Key Foundation
A parent-founded organization dedicated to assisting families of children who are hospitalized for an extended time, the Spare Key Foundation provides mortgage grants to families in the Minneapolis/St. Paul area.
- A Butterfly’s Touch
A non-profit Christian organization providing support to parents whose lives have been impacted by the heartbreaking loss of a child to early pregnancy loss, stillbirth, or newborn death. Their mission is to share the compassion of Jesus Christ by providing support to parents experiencing infant-loss during their time of need. They accomplish this by providing memory boxes and remembrances for parents; provide information and support through their free lending library and; help to lessen financial burdens through a fund to help with funeral and burial expenses.
- IVF authority
A Complete Guide to Understanding In Vitro Fertilization.IVF authority focuses on IVF procedure,cost,success rates,calculator,pregnancy,clinic reviews and assisted reproductive technology education.
- Be Not Afraid
An online outreach to parents who have received a poor or difficult prenatal diagnosis.
- Carrying to Term
Support following a tragic prenatal diagnosis.
- Compassionate Friends
A self-help organization, with chapters throughout the United States, which offers understanding and friendship to parents who have experienced the death of a child or miscarriage.
- Hannah’s Prayer
Offers Christian support to couples who are facing infertility or the loss of a child any time from conception through infancy.
- MISS Foundation
A non-profit volunteer based organization committed to providing emergency support to families in crisis after the death of their baby or young child from any cause.
- Morning Light Ministries
A Catholic ministry for bereaved mothers and fathers who have experienced the death of their baby through ectopic pregnancy, miscarriage, stillbirth or infant death up to one year old. This Catholic ministry also welcomes bereaved parents of other Christian denominations, bereaved parents of other faiths and bereaved parents of no religious affiliation who are struggling with the very notion of faith.
- SHARE Pregnancy and Infant Loss Support
A not-for-profit nondenominational organization providing support to those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth or newborn death. All information packets, correspondence and support are free of charge for bereaved parents.
- Sidelines National Support Network
Provides nationwide support for women and their families experiencing complicated pregnancies.