Trisomy 13/18 e Newsletters and News
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Annual Newsletter
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Professor John Carey, Dr Siri Fuglem-Berg and Jenny Robbins attend the SOFT UK Family Weekend
Jenny Robbins Dr Siri Fuglem Berg
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Dr Nora Shannon Professor Joan Morris Professor John Carey Jenny Robbins
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Professor John Carey with some of the families at the SOFT UK Weekend May 14/15th Hilton Northampton UK
A MUST watch! Neonatologist Dr. Martin McCaffrey, Medical Adviser to the International Trisomy 13/18 Alliance, speaks about his personal journey caring for newborns with T13/18 and how the evidence supports that doctors MUST change the way they care for these children. https://www.youtube.com/watch?v=UcLqb4VSkHc
Media: Specialist says proper medical care leads to longer lives
Dr Glen Green said,
"Children with trisomy 18 who get proper medical care can live longer lives. Giving these kids medical care makes it possible for them to live past a year. We know that there are things that can be done"....... more
Press Release Women not given accurate information about pregnancy blood tests Aug 2015
Women seeking to make informed decisions regarding non-invasive prenatal tests (NIPT) are not receiving accurate information.....more
Parents’ Submission to London Hospital Clinical Ethics Committee July 2015
Our unborn daughter was diagnosed with Trisomy 18 at 23 weeks’ gestation. When we considered the care we wanted for our daughter.....more
ITA cited as Resources for Patients
Never say never about our child Published on 06 May 2015 Cite this as: BMJ 2015;350:h1246
http://www.bmj.com/content/350/bmj.h1246/rr-15
Media: Specialist says proper medical care leads to longer lives
Dr Glen Green said,
"Children with trisomy 18 who get proper medical care can live longer lives. Giving these kids medical care makes it possible for them to live past a year. We know that there are things that can be done"....... more
Press Release Women not given accurate information about pregnancy blood tests Aug 2015
Women seeking to make informed decisions regarding non-invasive prenatal tests (NIPT) are not receiving accurate information.....more
Parents’ Submission to London Hospital Clinical Ethics Committee July 2015
Our unborn daughter was diagnosed with Trisomy 18 at 23 weeks’ gestation. When we considered the care we wanted for our daughter.....more
ITA cited as Resources for Patients
Never say never about our child Published on 06 May 2015 Cite this as: BMJ 2015;350:h1246
http://www.bmj.com/content/350/bmj.h1246/rr-15
Trisomy 18 and trisomy 13 - incompatible with life - RUBBISH
Leila aged 3 trisomy 18 Maristella aged 3 trisomy 18 Adalee age 3 trisomy 13
Photos courtesy of Tracking Rare Incidence Syndromes (TRIS) project, Southern Illinois University Carbondale
Photos courtesy of Tracking Rare Incidence Syndromes (TRIS) project, Southern Illinois University Carbondale
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