Partners and collaborations

Our partners and sister organisations

11q USA

The nonprofit 11qUSA.com US Network, which we are in good contact with, serves as an invaluable source of information, offering vital resources and support to families and individuals affected by 11th chromosome abnormalities, while fostering understanding through shared efforts and expertise.
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11q Spain

The website of the Spanish 11q group is dedicated to raising awareness, providing information, and offering support to individuals and families affected by Jacobsen Syndrome in Spanish-speaking communities.
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11q LATINOAMERICA

The website 11q Latinoamérica provides resources, products, and support for families, parents, and communities affected by 11th chromosome abnormalities, focusing on raising awareness and fostering connections across Latin America.
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EUROPEAN CHROMOSOME 11 GROUP

This Facebook group, run on behalf of the European Chromosome 11 Network, serves as a space to share news about the network, updates on conferences, and stories from families affected by chromosomal disorders on 11q and 11p.
_{Language: mostly English, automatic translations to numerous languages available.}

11q UK AND IRELAND GROUP

The Facebook group "Jacobsen Syndrome 11q UK and Ireland" is a supportive community for individuals and families affected by 11q chromosome disorders, offering a platform to discuss challenges and share experiences, with a focus on those in the UK and Ireland while welcoming members worldwide.
_{Language: mostly English, automatic translations to numerous languages available.}

US JACOBSEN SYNDROME GROUP

The Facebook group, run by the US Chromosome 11q Network, offers a supportive community for individuals and families affected by Jacobsen Syndrome (11q deletion) and other 11q chromosome abnormalities, fostering connections and providing a space to share experiences and support.
_{Language: mostly English, automatic translations to numerous languages available.}

EURORDIS

EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe.
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ORPHANET

Orphanet is a comprehensive resource offering detailed information on rare diseases, including their diagnosis, treatment, and ongoing research, along with a network of specialized healthcare professionals and organizations.
_{Languages: English, French, Spanish, German, Italian, Portuguese, Dutch, Polish, and others}

UNIQUE

The website RareChromo.org, run by the organisation Unique, offers information, resources, and support for those affected by rare chromosome and gene disorders, fostering awareness and community.
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ACHSE ONLINE

ACHSE e.V., the Alliance of Chronic Rare Diseases, is the network for and by people with chronic rare diseases and their families in Germany. ACHSE represents the interests of its more than 130 patient organizations in politics, society, medicine, science, and research at both national and European levels.
_{Language: German}

KINDERNETZWERK

The German organisation Kindernetzwerk e.V. serves as a nationwide platform representing parent initiatives, regional self-help associations, counseling centers, and over 150 national associations with more than 200,000 members in total. It supports families with cross-disease-related questions and provides advice on aspects of daily life in their unique situation with a chronically ill or disabled child.
_{Language: German}

NAKOS

The website NAKOS.de provides comprehensive information, advice, and support for families of people with rare diseases, particularly regarding self-help groups and networks.
_{Language: German}

AKTION MENSCH

Aktion Mensch combines a social lottery, project funding, and awareness-raising efforts to support social projects, assist people with disabilities, children, and young people, and promote inclusive coexistence through campaigns for inclusion.
_{Language: German}

UNDERSTANDING JACOBSEN SYNDROME

The website offers educational slides and resources to help individuals, families, and professionals better understand Jacobsen Syndrome, its characteristics, and associated challenges.
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IK HEB DAT

The website Ikhebdat.nl provides information about numerous health conditions, for example Jacobsen Syndrome, including its characteristics, causes, and effects, to support awareness and understanding among Dutch-speaking individuals and families.
_{Language: Dutch}

About our external links:

The European Chromosome 11 Network e.V. is not responsible for the content, quality, or functionality of external links provided on this website. While we strive to keep our links up to date, we cannot guarantee their accuracy or accessibility. Please note that the information on external websites may not necessarily reflect our views or opinions. If you encounter any issues or have questions or recommendations, please feel free to contact us.