e-hod.org

E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

European Network and Registry for Homocystinurias and Methylation Defects. European Network and Registry. Information for adults, parents and carers. List of patients organizations. Centres of clinical care. Description of the project. Link to registry and statistics. The host city of the 2016 Olympic Games is now the proposed venue for the 2nd International Patient-Expert Meeting for Homocystinuria. The Meeting is being scheduled. For September 4th, 2017 in Rio. Subscribe to the newsletter.

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E-HOD - European Network and Registry for Homocystinurias and Methylation Defects | e-hod.org Reviews

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European Network and Registry for Homocystinurias and Methylation Defects. European Network and Registry. Information for adults, parents and carers. List of patients organizations. Centres of clinical care. Description of the project. Link to registry and statistics. The host city of the 2016 Olympic Games is now the proposed venue for the 2nd International Patient-Expert Meeting for Homocystinuria. The Meeting is being scheduled. For September 4th, 2017 in Rio. Subscribe to the newsletter.

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1 news

2 patients and families

3 health care professionals

4 about e hod

5 links

6 for homocystinurias

7 and methylation defects

8 information for children

9 guidelines and recommendations

10 laboratory services

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E-HOD - European Network and Registry for Homocystinurias and Methylation Defects | e-hod.org Reviews

https://e-hod.org

European Network and Registry for Homocystinurias and Methylation Defects. European Network and Registry. Information for adults, parents and carers. List of patients organizations. Centres of clinical care. Description of the project. Link to registry and statistics. The host city of the 2016 Olympic Games is now the proposed venue for the 2nd International Patient-Expert Meeting for Homocystinuria. The Meeting is being scheduled. For September 4th, 2017 in Rio. Subscribe to the newsletter.

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e-hod.org

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Partners - E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

http://www.e-hod.org/partners

European Network and Registry for Homocystinurias and Methylation Defects. E-HOD adds value to the existing E-IMD. Project by using the same registry technology and network. In addition to the funded partners, there are unfunded collaborating partners. They benefit from access to the registry, workshops, meetings and information resources being developed by E-HOD, and their activities extend the reach of the project beyond the funded partners. Patient support groups, industry and other. Tel: 43 55 744 010.

2

Laboratory services - E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

http://www.e-hod.org/laboratory-services

European Network and Registry for Homocystinurias and Methylation Defects. Laboratory services for diagnosing and monitoring homocystinurias and related diseases are already available in various databases:. E-HOD has been funded by the European Commission through its Public Health and Consumer Protection Directorate (DG SANCO), PHEA programme ( more information.

3

Information for children - E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

http://www.e-hod.org/information-for-children

European Network and Registry for Homocystinurias and Methylation Defects. An information booklet on homocystinurias and related diseases for children of school age is now available for download in English. Translations into various European languages are accessible through the "flag panel" above the main menu. Apart from the E-HOD brochure there is also an excellent booklet available in Portugese which can be accesses HERE. Information for adults, parents and carers. List of patients organizations.

4

Information for adults, parents & carers - E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

http://www.e-hod.org/information-for-adults-parents-carers

European Network and Registry for Homocystinurias and Methylation Defects. Information for adults, parents and carers. Information for adults, parents and carers. A selection of information booklets on homocystinurias, methylation disorders and related diseases for adults, parents and carers are now available for download in English. Translations into various European languages are (or soon will be) accessible through the "flag panel" above the main menu. Information for adults, parents and carers.

5

Information for health care professionals - E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

http://www.e-hod.org/information-for-health-care-professionals

European Network and Registry for Homocystinurias and Methylation Defects. Information for health care professionals. Information for health care professionals. An information booklet on the homocystinurias and related diseases for healthcare professionals is being prepared and will be available later in 2013. E-HOD has been funded by the European Commission through its Public Health and Consumer Protection Directorate (DG SANCO), PHEA programme ( more information.

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Partnerships | Recordati Rare Diseases Academy

http://www.rrd-foundation.org/en/content/partnerships

Skip to main content. Recordati Rare Diseases Academy. Advancing knowledge in rare diseases:. Independent, professional, education and training. Who is the Foundation for? What do participants say about our courses? E-IMD is the European registry and network for intoxication type metabolic diseases. Its aim is to promote health for individuals affected with an organic aciduria (OAD) or with a urea cycle defect (UCD). E-IMD has partnered with the Foundation for its training and education activities.

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Società Italiana Per lo Studio delle Malattie Metaboliche Ereditarie e lo Screening Neonatale

http://www.simmesn.it/it/wgroups.html

Società Italiana Per lo Studio delle Malattie Metaboliche Ereditarie e lo Screening Neonatale. Italian Society for the Study of Inborn Metabolic Diseases and Newborn Screening. Commissioni e Gruppi di Lavoro attivati all'interno della SIMMESN o che ad essa fanno riferimento. L'accesso ad alcune pagine relative ai singoli Gruppi di Lavoro potrebbe essere riservato ai componenti e protetto da specifica password. Gruppo di redazione per il Rapporto Tecnico sugli Screening Neonatali in Italia. Elaborazione d...

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Homocystinuria | Orphan Europe

http://www.orphan-europe.com/patients-and-families/homocystinuria

Skip to main content. Big thinking for people with rare diseases. A growing international presence. At the forefront of rare disease policy. Hyperammonaemia due to NAGS, IVA, MMA or PPA. Vitamin E deficiency in chronic cholestasis. Foods for Special Medical Purposes. Urea Cycle Disorders Consortium. Orphan Europe Volunteer Programme. Support to patient organisations. Compliance - our guiding principles. Orphan Europe has also developed information for patients and families. National Association for PKU a...

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E-HOD - European Network and Registry for Homocystinurias and Methylation Defects

European Network and Registry for Homocystinurias and Methylation Defects. European Network and Registry. Information for adults, parents and carers. List of patients organizations. Centres of clinical care. Description of the project. Link to registry and statistics. The host city of the 2016 Olympic Games is now the proposed venue for the 2nd International Patient-Expert Meeting for Homocystinuria. The Meeting is being scheduled. For September 4th, 2017 in Rio. Subscribe to the newsletter.

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