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Sean is 9 years old, son of Olga and Bill Gerber. His story can be found HERE #gallery-1 { margin: auto; } #gallery-1 .gallery-item { float: left; margin-top: 10px; text-align: center; width: 33%; } #gallery-1 img { border: 2px solid #cfcfcf; } #gallery-1 .gallery-caption { margin-left: 0; } Lisa Marie Hodes Daughter to Renee and Paul Hodes, sister to David and Marissa whom she all adores. She is a happy, funny little girl who loves arts and crafts, music, and using the phone and computer…… Read about Lisa HERE Please donate to the AHC foundation and help us fund research on Alternating Hemiplegia. 1 IN A MILLION Kathleen Egan A well told story about Kathleen´s struggles and accomplishments . Click HERE for the story. Verið er að þróa lyf við RETT sjúkdómnum sem gætu verið komin á markað eftir ca 5 ár ef allt gengur vel. Viðtal við foreldra stúlku með RETT er hægt að sjá HÉRNA Yesterday there was a 2 hour video-conference that included AHC representatives from US, Italy, Holland, Belgium, Iceland and Canada. The meeting was very informative and worked quite well. There will be another meeting scheduled for next month and hopefully we will have more associations present. THE VACCINES The British rock band The Vaccines made a generous donation to the AHC association of Iceland recently. The Vaccines which has the Icelandic bass guitar player Árni Hjörvar was recently nominated to the Brit awards in thYe category of “Best breakthrough act” Alternating Hemiplegia of Childhood is an orphan disease. ÁRNI [...] The Vaccines Árni Hjörvar Breska hljómsveitin The Vaccines styrkti AHC samtökin á Íslandi nýlega. The Vaccines er Bresk rokkhljómsveit með íslenska bassaleikaranum Árna Hjörvar innanborðs en the Vaccines hafa verið að gera það gott á síðasta ári og voru nýlega tilnefndir til Brit tónlistarverðlaunanna í flokki „Best Breakthrough Act“. AHC er [...] AHC Kids – One in a Million campaign started today. The idea is to get 1 million people to donate 1 usd and help fund important research for AHC kids all around the world. For more information on how to donate click HERE Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient [...] |
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