galactosaemia.eu

Galactosaemia.eu

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. EGS / GalNet Meeting 2017. The bi-anual EGS/GalNet meeting 2017 will take place in Amsterdam. June 16th : Meet and greet, EGS general meeting. June 17th : EGS/GalNet scientific meeting. June 18th : Cultural program in Amsterdam. Tel 31 20 658 8111. The EGS is an umbrella society of national Galactosaemia patient organizations. We represent more than 800 patients across Europe.

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Galactosaemia.eu | galactosaemia.eu Reviews

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European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. EGS / GalNet Meeting 2017. The bi-anual EGS/GalNet meeting 2017 will take place in Amsterdam. June 16th : Meet and greet, EGS general meeting. June 17th : EGS/GalNet scientific meeting. June 18th : Cultural program in Amsterdam. Tel 31 20 658 8111. The EGS is an umbrella society of national Galactosaemia patient organizations. We represent more than 800 patients across Europe.

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Galactosaemia.eu | galactosaemia.eu Reviews

https://galactosaemia.eu

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. EGS / GalNet Meeting 2017. The bi-anual EGS/GalNet meeting 2017 will take place in Amsterdam. June 16th : Meet and greet, EGS general meeting. June 17th : EGS/GalNet scientific meeting. June 18th : Cultural program in Amsterdam. Tel 31 20 658 8111. The EGS is an umbrella society of national Galactosaemia patient organizations. We represent more than 800 patients across Europe.

INTERNAL PAGES

galactosaemia.eu

1

Annual meeting 2015 | Galactosaemia.eu

http://www.galactosaemia.eu/welcome/annual-meeting-2015

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. Three main determinants of reaching a significant research activity level in a rare disease are. The existence of patient organizations, patient registries and international networks. Quote: Orphanet RDR study, 2010. As we fully support above quote we organize the EGS annual meeting to facilitate the cooperation between international Galactosaemia patient and professional networks. 1300 – 18.00. Dinner in the hotel.

2

About the EGS | Galactosaemia.eu

http://www.galactosaemia.eu/about-the-egs

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. I am text block. Click edit button to change this text. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. The EGS was founded in 1997 as a direct result of the Fulda conference on Galactosaemia in 1993. During the Fulda meeting reprenstatives of national patient organisations met for the first time. Differences in screening and speed of diagnosis.

3

Galactosaemia in Austria | Galactosaemia.eu

http://www.galactosaemia.eu/galactosaemia-in-austria

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. Full member as of 1998. Sabine Ebner and Else Tanner. 43 669 195 82 484. Sabine.ebner@oegast.at or austria@galactosaemia.eu.

4

Galactosaemia In Switzerland | Galactosaemia.eu

http://www.galactosaemia.eu/galactosaemia-in-switzerland

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. Full member as of 1998. 41 71 950 06 33.

5

About Galactosaemia | Galactosaemia.eu

http://www.galactosaemia.eu/about-galactosaemia

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. Pregnancy and birth of a child with galactosemia usually give no indication that there is a problem. The baby is born ‘ healthy ‘ and starts breast or bottle feeding. After a few days, the baby gets ill, because galactose and galactose 1 phosphate levels rise in the baby’s blood. There is no medication or treatment to cure Galactosaemia. That means that Galactosaemia is a chronic (lasting) disease. A human being is made ...

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galnet.mumc.betawerk.eu

Links | GalNet

http://www.galnet.mumc.betawerk.eu/links

European Comission expert on rare diseases. International Rare Disease Research Consortium - IRDiRC. Classic galactosemia or Type I galactosemia. GALK deficiency or Type II galactosemia. GALE deficiency or Type III galactosemia. National Organization for Rare Disorders - NORD:. Classic galactosemia and related disorders. European Galactosaemia Society - EGS. Australian Galactosaemia Support Network - AGSN. Galactosemia Association of Midwest America - GAMA. Galactosemic Families of Minnesota - GFMN.

galactosemianetwork.org

Funding | GalNet

https://www.galactosemianetwork.org/funding

Rsaquo; About GalNet. The foundation of the Galactosemia Network could only be achieved thanks to the funding support of:. Academic Medical Fund from the Maastricht University Medical Center (MUMC ). Dutch Galactosemia Society (GVN). European Galactosemia Society (EGS). Health Research Board (HRB). Netherlands Organisation for Scientific Research (NWO). 2017 Maastricht UMC Disclaimer.

galactosemianetwork.org

Mission | GalNet

https://www.galactosemianetwork.org/mission

Rsaquo; About GalNet. The international network for galactosemia GalNet. Was established in 2012. It includes professionals from 17 European countries. Namely Austria, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, France, Germany, Greece, Ireland, Italy, Lithuania, Netherlands, United Kingdom, Portugal, Spain and Switzerland, as well as Israel. The GalNet was founded with the great support of the European Galactosemia Society. Clinicians, researchers, nutritionists, and patients and families.

galnet.mumc.betawerk.eu

Mission | GalNet

http://www.galnet.mumc.betawerk.eu/mission

Rsaquo; About GalNet. The international network for galactosemia GalNet. Was established in 2012. It includes professionals from 17 European countries. Namely Austria, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, France, Germany, Greece, Ireland, Italy, Lithuania, Netherlands, United Kingdom, Portugal, Spain and Switzerland, as well as Israel. The GalNet was founded with the great support of the European Galactosemia Society. Clinicians, researchers, nutritionists, and patients and families.

galnet.mumc.betawerk.eu

Funding | GalNet

http://www.galnet.mumc.betawerk.eu/funding

Rsaquo; About GalNet. The foundation of the Galactosemia Network could only be achieved thanks to the funding support of:. Academic Medical Fund from the Maastricht University Medical Center (MUMC ). Dutch Galactosemia Society (GVN). European Galactosemia Society (EGS). Health Research Board (HRB). Netherlands Organisation for Scientific Research (NWO). 2017 Maastricht UMC Disclaimer.

galactosemianetwork.org

Links | GalNet

https://www.galactosemianetwork.org/links

European Comission expert on rare diseases. International Rare Disease Research Consortium - IRDiRC. Classic galactosemia or Type I galactosemia. GALK deficiency or Type II galactosemia. GALE deficiency or Type III galactosemia. National Organization for Rare Disorders - NORD:. Classic galactosemia and related disorders. European Galactosaemia Society - EGS. Australian Galactosaemia Support Network - AGSN. Galactosemia Association of Midwest America - GAMA. Galactosemic Families of Minnesota - GFMN.

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galactosaemia.eu

Galactosaemia.eu

European Galactosaemia Society (EGS). The Power of Galactosaemic Patients in Europe. EGS / GalNet Meeting 2017. The bi-anual EGS/GalNet meeting 2017 will take place in Amsterdam. June 16th : Meet and greet, EGS general meeting. June 17th : EGS/GalNet scientific meeting. June 18th : Cultural program in Amsterdam. Tel 31 20 658 8111. The EGS is an umbrella society of national Galactosaemia patient organizations. We represent more than 800 patients across Europe.

galactosaemia.org

GSG UK | Galactosaemia Support Group

Diagnosis & Treatment. Medical Advisory Panel of the GSG. Food & Drink. GSG Weekend Away 2018. 100 Club Rules & Regulations. How to help your child use more words and sentences. Guideline To Speech Development For 0-4 Year Olds. Information For School Dinner Services. School Cook Data Sheet. The work the GSG does can only be done with funding. A donation, however small is a great help to the group. Without funding there is no GSG. The GSG uses the funding to produce information booklets, test new foods, ...

galactosaemie.ch

Galaktosämie Schweiz -

Was ist Galaktosämie. Tel 031 859 04 45. Die Galaktosämie - Informationen für Eltern, Galaktosämie Betroffene, Angehörige, Lehrer und weitere Interessierte. VON BETROFFENEN FÜR BETROFFENE! Diese Informationsseiten sollen Ihnen helfen, besser zu verstehen. Was die Galaktosämie ist. Welche Besonderheiten Sie für Ihr Kind beachten müssen. Welche Behandlungsmaßnahmen es gibt, um Ihr Kind zu unterstützen. Eine Homepage ersetzt das Gespräch mit direkt Betroffenen nicht, werden Sie Mitglied!

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