ESHG Genetic Educational Materials & Sources
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  • Para escolas primárias
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​This page provides links to sources of information that are primarily designed for patients and their relatives although many will also be useful to senior school pupils and some professionals. The information includes comprehensive A-Z directories of summarised information for numerous genetic conditions (including local contact details) as well as educational leaflets that can be downloaded and printed. 
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         COVID-19 Links for
​    
Patients & their Families

A new web page with links to many sources of support & information about coronavirus, including explanations of the science. The web page also includes links to the UK NHS, US guidelines, patient organisations, European Centre for Disease Prevention and Control, and the World Health Organisation.
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EuroGentest

A series of 15 leaflets providing general information for patients and families about genetics and genetic testing, in multiple languages. Based in Leuven, Belgium. Provided in MULTIPLE LANGUAGES. 
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Contact

A UK charity supporting families, providing an A-Z directory of many genetic conditions and full contact details of support groups.
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Orphanet

A consortium of 40 countries, providing summarised info on rare diseases & patient organisations (with contact details in many countries, especially in Europe). Provided in MULTIPLE LANGUAGES. ​ 
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Antenatal Results & Choices

This organisation offers non-directive information & support to parents, before, during & after antenatal screening. 
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Unique
​support group

​A support group especially for chromosome disorders but also for single gene disorders.  Numerous family-friendly, medically-verified, disorder-specific information guides, in several languages.  ​
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MedlinePlus
​Genetics

A large guide to genetic conditions hosted by the US National Library of Medicine. It was previously named Genetics Home Reference. See the section: "Genetic Conditions"
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Inherited cancers

Information on genetic conditions and inherited cancers, provided by Macmillan. It includes information relating to the causes, the risk factors and the possible consequences of test results.
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Genetic Alliance

This UK charity provides information for patients, families and other individuals who may be interested in genetic conditions.
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Clinical genetics leaflets

Source of many leaflets on clinical genetic conditions and genetic testing, from ScotGEN and the South-East Scotland Genetic Service. 
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Understanding genetic disorders

Animations explaining different types of inheritance patterns e.g. autosomal dominant, autosomal recessive, consanguinity (cousin marriages), X-linked recessive and chromosomal rearrangements. Produced by National Centre for Medical Genetics and compiled by Univ. College Dublin.  The explanations are provided in MULTIPLE LANGUAGES.  
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EGAN -
​patient network

The "Patients Network for Medical Research and Health", EGAN is an alliance of European disease-specific patient organisations and National Genetic Alliances. Working for a voice in research & health policy, it seeks to improve understanding, effective treatment, & prevention of genetic conditions & also support for the people affected. 
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EURORDIS
Rare Diseases Europe

This is a non-governmental patient-driven alliance of patient organisations representing 862 rare disease patient organisations in 70 countries.​ ​They aim to build a strong pan-European community of patient organisations and people living with rare diseases. Provided in MULTIPLE LANGUAGES. ​


LOCALIZED/NATIONAL INITIATIVES

Please note that the EuroGentest, Orphanet, Understanding genetic disorders and EURORDIS websites (above) are provided in multiple languages. 

Other resources:
​

Scotland
Scottish Genetics Education Network 
Scottish Genomes Partnership (SGP)
Office for Rare Conditions Glasgow

​Ireland
www.cancergenetics.ie
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Nederland

www.erfelijkheid.nl 

USA
National Organization for Rare Disorders
Brightpink.org (breast & ovarian cancer)
GARD (Genetics And Rare Diseases information centre)
American Society of Gene & Cell Therapy: How gene therapy works for specific conditions
​
Vietnam
Vietnamese Organization for Rare Diseases

​CORONAVIRUS / COVID-19 RELATED

​BSGM advice for patients

Additional links may be provided soon


MASSIVE OPEN ONLINE COURSES (MOOCs)

Understanding Genetic Disorders: How DNA Influences Health
Genomic Medicine: Harnessing the Power of the Human Genome
 

Cancer in the 21st Century: the Genomic Revolution
Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing
The Genomics Era: the Future of Genetics in Medicine
Genomic Medicine: Transforming Patient Care in Diabetes
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European Journal of Human Genetics

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DNA Day Contest 2022
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Revista Europea de genética humana 

​​Inicio ESHG

Concurso del Día del ADN
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​European Journal of Human Genetics 
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​ESHG início

Concurso do dia do ADN
​Website © Edward and Adam Tobias, 2021. Please feel free to get in touch, using the contact form, e.g. with any comments or suggestions for amendments, such as adding up-to-date, high-quality, free educational sources. The accuracy, precision or comprehensiveness of the information and views provided on this website, or on the pages to which it directly or indirectly links, cannot be guaranteed.  The information available on this website, & on the pages to which it links, is not intended to replace professional health care. It is non-contractual, & can be changed at any time. 
Sitio web © Edward y Adam Tobias (Reino Unido), 2021. Traducción realizada por Anna Esteve Garcia (Barcelona, España) e Irene Esteban (Glasgow, Reino Unido). No dude en ponerse en contacto mediante el formulario de contacto; por ejemplo, con cualquier comentario o sugerencia de mejora, como la propuesta de otras herramientas educativas gratuitas de alta calidad y actualizadas. La exactitud, precisión o exhaustividad de la información proporcionada en este sitio web, o en las páginas a las que enlaza directa o indirectamente no está garantizada. La información disponible en este sitio web y en las páginas a las que se vincula no pretende reemplazar la atención médica profesional. No es contractual y puede cambiar en cualquier momento.​
Site © Edward e Adam Tobias (Reino Unido), 2022. Tradução de Raquel Gouveia Silva (Lisboa, Portugal) e Juliana Miranda Cerqueira (Porto, Portugal & Tampere, Finland).  Sinta-se à vontade para entrar em contato através do formulário de contato; por exemplo, com quaisquer comentários ou sugestões de melhoria, bem como através da proposta de outras ferramentas educacionais gratuitas de alta qualidade e atualizadas. A exatidão, precisão ou abrangência das informações e visualizações fornecidas neste site, ou nas páginas às quais ele se vincula direta ou indiretamente, não pode ser garantida. As informações disponíveis neste site e nas páginas às quais ele se associa não se destinam a substituir os cuidados de saúde de profissionais. Não é contratual e pode ser alterado a qualquer momento.

           ​                             www.eurogems.org            
European Board of Medical Genetics
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​National human genetics societies

ESHG Podcast Series
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Contact
Board Europeo de Genética Médica​
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​Sociedades nacionales de genética humana

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Contacto
​​Comité Europeu de Genética Humana

Sociedades Nacionais de Genética Humana

Série de podcasts da ESHG
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Contato
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  • Home
  • For genetics professionals
  • For universities & students
  • For patients & families
  • Non-genetics specialists & primary care
  • For secondary schools
  • For primary schools
  • Ethical, legal & social implications
  • Inicio
  • Para profesionales especialistas en genética
  • Para estudiantes de universidad
  • Para pacientes y familias
  • Profesionales no especialistas en genética y profesionales de atención primaria
  • Educación secundaria
  • Educación primaria
  • Implicaciones éticas, legales y sociales
  • Início
  • Para profissionais geneticistas
  • Para universidades e estudantes
  • Para pacientes e famílias
  • Especialistas não-geneticistas e cuidados primários
  • Para escolas secundárias
  • Para escolas primárias
  • Implicações éticas, legais e sociais