“Important to test, important to support”: attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel

A Raz - Social science & medicine, 2004 - Elsevier
… organizations and support groups of people with disabilities and genetic disorders in Israel.
It comprises general organizations as well as support groups for particular genetic disorders. …

A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders

J Goodwin, K Schoch, V Shashi… - Journal of …, 2015 - Wiley Online Library
… counsellors can facilitate the process of gathering a support network, by referring caregivers
to relevant local and online support groups; of which there are many for each condition type …

Genetic disorders in the Arab world

L Al-Gazali, H Hamamy, S Al-Arrayad - Bmj, 2006 - bmj.com
… A similar approach was implemented in the Arab Negav Bedouin community, where the
genetic data on carrier status for genetic disorders common in this community were incorporated …

Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders

SD Grosse, MS Schechter, R Kulkarni… - …, 2009 - publications.aap.org
… in the management of these disorders. Within medical genetics, there is widespread support
for specialized clinics that treat individuals with specific diseases or groups of diseases (eg, …

Serious genetic disorders: can or should they be defined?

DC Wertz, BM Knoppers - … journal of medical genetics, 2002 - Wiley Online Library
… ethics committees, members of all groups except the IASHG clearly favored the patient as
definition maker (Table III). There was little support for definition by national ethics committees …

Care for patients with ultra-rare disorders

RCM Hennekam - European journal of medical genetics, 2011 - Elsevier
… ultra-rare disorders. It is suggested that the many very small support groups for ultra-rare
disorders … Many genetic disorders have relatively low prevalence and incidence and fall in the …

Online Mendelian Inheritance in Man (OMIM), a knowledgebase of human genes and genetic disorders

A Hamosh, AF Scott, JS Amberger… - Nucleic acids …, 2005 - academic.oup.com
… Finally, the OMIM home page maintains links to many useful genetic resources including
the Genetic Alliance, an umbrella organization of over 600 genetic support groups. …

An online compendium of treatable genetic disorders

D Bick, SL Bick, DP Dimmock, TA Fowler… - … of Medical Genetics …, 2021 - Wiley Online Library
… When faced with a new diagnosis of a rare genetic disorder, health care providers … The
data that support the findings of this study are available from the corresponding author …

Online Mendelian Inheritance in Man (OMIM), a knowledgebase of human genes and genetic disorders

A Hamosh, AF Scott, J Amberger… - Nucleic acids …, 2002 - academic.oup.com
… Finally, the OMIM home page maintains links to many useful genetic resources including
the Genetic Alliance, an umbrella organization of over 600 genetic support groups. …

Genetic disorders in children and young adults: a population study.

PA Baird, TW Anderson, HB Newcombe… - … of human genetics, 1988 - ncbi.nlm.nih.gov
… the genetic load, then -79/1,000 live-bornindividuals have been identified as having one or
other genetic disorder … These new data represent a better estimate of the genetic load in the …