Information on Congenital Anomalies written for parents
General information on a range of birth defects, presented in a user friendly style. Access to patient information leaflets and support groups.
Unique is an international charitable organisation that provides information and support for families affected by rare chromosomal disorders. As well as an extensive range of patient information leaflets, detailing the clinical phenotype, they also provide a support network for families and professionals involved with chromosomal disorders.
March of Dimes
This website contains information written for parents on a number of birth defects and related illnesses. Some specific teratogen exposures are covered, such as Congenital Zika Syndrome and Congenital Syphilis. The site also provides information on genetic syndromes and metabolic disorders. Useful information about causation, prevention and treatment are covered within the topics.
Genetic disorders, craniofacial anomalies and birth defects. Children’s Hospital of Philadelphia
This website contains information intended for the use of parents on a number of paediatric conditions. There is a section on Genetic Syndromes and Birth Defects which includes several leaflets on relatively common defects such as cleft lip and palate and limb defects. However, further information can be found in other sections such as Craniofacial Anomalies and Disorders.
EURORDIS Rare Diseases Europe
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 761 rare disease patient organisations in 68 countries. The website contains patient vignettes and videos, information on orphan drugs, online training modules and information on international rare disease events.
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
(IF) The International Federation for Spina Bifida and Hydrocephalus
The International Federation for Spina Bifida and Hydrocephalus (IF) was founded by people with spina bifida and hydrocephalus (SBH) and their families in 1979 and now includes 60 member organisations in Africa, Australia, the Americas, Asia and Europe. To find contacts in your region, visit IF's member page. IF's Global Prevention Initiative has an active Facebook page through which they work to unite all relevant organisations, policy makers, and health care workers in their effort to reduce the risks of spina bifid and hydrocephalus.
As part of IF's January 2020 promotion of World Folic Acid Awareness week, this organisation provided a toolkit on their website that included a new leaflet on folic acid ‘What every woman needs to know before becoming pregnant’, with new updated information on vitamin B12
Shine provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff. Shine enables people to get the best out of life.
Smile Train is an international children’s charity with a sustainable approach to a single, solvable problem: cleft lip and palate. Millions of children in developing countries with untreated clefts live in isolation, but more importantly, have difficulty eating, breathing, hearing, and speaking. Cleft repair surgery is simple, and the transformation is immediate. The Smiletrain sustainable model provides training, funding, and resources to empower local doctors in 85+ developing countries to provide 100%-free cleft repair surgery and comprehensive cleft care in their own communities.
DysNet is a global network connecting anyone who is personally or professionally affected by congenital limb deficiency.
Ugandan Spina Bifida and Hyrdrocephalus Awareness Network (Shynea)
This network, called Shynea Uganda, has the following mission: to create and foster a co-operative networking of various social agencies; and to effectively influence policies, programmes and practices of government in order to holistically meet the needs of children with spinal bifida and hydrocephalous and support their care takers. The organisation was established in 2015 and is fully registered in Uganda.
The site serves as a support group, a source of non-technical information, and a gateway into the personal websites of many parents of omphalocele babies and kids. The information contained in this site is referenced from various medical websites and member experiences. It is not meant to contradict any information you may receive from your personal physician and should not be used to make decisions about surgical treatment.
The USA's Newborn Screening Clearinghouse
This site serves as a clearinghouse for local, state, and national newborn screening information (in English and Spanish) in the United States. It contains a Prenatal and Newborn Screening Brochure that was published in July 2019 with useful infographics for parents expecting a baby. The clearinghouse provides current educational and family support and services information, materials, and resources about newborn screening.
CDH Stars and Angels
This USA-based nonprofit organization, CDH Stars and Angels, is dedicated to empowering families affected by Congenital Diaphragmatic Hernia (CDH). The mission is to ensure families facing this diagnosis get to an experienced Children's Hospital where they can also afford procedures and testing often associated with this defect. And, for families who are grieving, they offer aid with burial expenses.
Information on Congenital Heart Defects
British Heart Foundation
British Heart Foundation is a UK charity which fights cardiovascular disease, including congenital heart disease. It provides information on congenital heart defects for parents.
Children's Hospital Colorado: Heart Resources for Families
They have compiled helpful information and links related to pediatric heart disease, some of their favorite patient stories and information about their support programs for families of children with heart conditions. There are child support groups, guides, toolkits, and links to other organizations.
Cincinnati Children’s Hospital: Your Child’s Condition & Care
This section of their website provides information on many pediatric conditions and treatments. Visitors to the site can look up information (in English and Español) on child illnesses or conditions.
(last updated 21 February 2020)