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XLP Research Trust | HomeThe XLP Research Trust is a UK based charity that promotes and funds medical research into a potential cure for Duncans disease
http://www.xlpresearchtrust.org/
The XLP Research Trust is a UK based charity that promotes and funds medical research into a potential cure for Duncans disease
http://www.xlpresearchtrust.org/
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XLP Research Trust | Home | xlpresearchtrust.org Reviews
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The XLP Research Trust is a UK based charity that promotes and funds medical research into a potential cure for Duncans disease
xlpresearchtrust.org
XLP Research Trust | XLP העמותה לחקר
http://www.xlpresearchtrust.org/he
1506;מוד הבית. 1488;ודות XLP. 1506;לוני מידע. 1511;ישורים שימושיים. 1499;תבו לנו. 1492;אתר הרשמי דף הבית. 1514;פקיד העמותה לחקר XLP. 1492;עמותה נוסדה ב- 2005 ופועלת בתחומים הבאים:. 1497;צירת קשר ומתן תמיכה למשפחות הסובלות מ-XLP. 1497;צירת מודעות בקרב העולם הרפואי והציבור הרחב. In late November 2003 our 4 sons (Joshua - 14, Nathan - 12, Daniel - 10 and Luke - 6) were diagnosed with a rare genetic condi. 2016 The XLP Research Trust Registered Charity No: 1111075 Visitor number 1417130.
XLP Research Trust | History of the XLP Research Trust
http://www.xlpresearchtrust.org/history.asp
David and Allison Hartley from Romsey, Hampshire, UK established the XLP Research Trust after their four sons were diagnosed with XLP in 2003. The Hartley Boys story can be found in full, including up-to-date news, at their web site:. Download: The Silent Killer. In 2009 we started the process of having professional translations made of key web pages and information leaflets to help us reach out to families where English is not their language. The flags at the top of this page will direct you to the ...
XLP Research Trust | Inicio
http://www.xlpresearchtrust.org/es
El síndrome linfoproliferativo ligado al cromosoma X, o síndrome de Duncan, es una afección mortal poco frecuente que afecta exclusivamente a varones. Hasta la fecha, sólo se le ha diagnosticado a unas100 familias, con 400 casos en todo el mundo. No obstante, es probable que existan más personas afectadas en las que todavía no se haya hecho un diagnóstico adecuado. No obstante, los avances en genética hacen posible que, en pocos años, se disponga de un posible remedio. Concienciar sobre el XLP a los prof...
XLP Research Trust | Literature
http://www.xlpresearchtrust.org/literature.asp
Update on management and outcome of XLP1. An updated layman's guide. Fact sheet reproduced with permission from Great Ormond Street Hospital for Children NHS Trust. XLP Family Route Map. Providing key information on XLP for affected families. UK version. XLP General Guide Genetics. Providing a general guide to genetics. The Genetics of XLP. Gene Therapy and XLP. 2016 The XLP Research Trust Registered Charity No: 1111075.
XLP Research Trust | In the News
http://www.xlpresearchtrust.org/news.asp
Southern Daily Echo - 4 January 2008. Macca pops in to see Luke. LITTLE Luke Hartley didn't realise quite how famous his latest hospital visitor was. This is Hampshire - 24 November 2007. Young Luke Hartley recovering after second transplant op. A SECOND attempt to cure Hampshire boy Luke Hartley of a life-threatening genetic condition has gone well. BBC News Online - 12 November 2007. Brother given second transplant. Romsey Advertiser - 31 October 2007. This is Hampshire - 5 October 2007. The last of fo...
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Dinner4Good
http://www.dinner4good.com/dinner-charity.php?charity=Health
Sign in / Register. Create your Dinner Invitation. Here you can search for and select the charity you want to support. Please enter their name or the type of charity in the search box below. Search for a charity. Please select the charity youd like to raise money for. Vitalise is a national charity providing short breaks and holidays (respite care) for people with physical disabilities and carers. For more information please visit www.vitalise.org.uk. Http:/ www.vitalise.org.uk. Heart attacks need to be ...
Mio Piccolo Angelo: La Vita è anche questo
http://pertetommy.blogspot.com/2011/04/la-vita-e-anche-questo.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. La Vita è anche questo. E' una telefonata la mattina in Ufficio. E' un Pronto Soccorso. E' una stanza di Ospedale. E' una flebo nel braccio. E' un cucciolo che non ha più la forza di fare altro che dormire. Su un letto in un Ospedale. In una camera isolata. Un anno fa entravamo con te in Ospedale, iniziava il tuo Ultimo Viaggio. Quanto ci manchi non sapremo mai dirlo abbastanza. Tommy, Cucciolo Mio.
Mio Piccolo Angelo: Questa notte ho sognato
http://pertetommy.blogspot.com/2011/06/questa-notte-ho-sognato.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. Questa notte ho sognato. Questa notte ho sognato di volare. Mi libravo, leggero. Come un Angelo nel cielo oscuro. Come polvere senza peso. Venivo da Te,. E i Venti del vivere mi spingevano verso il centro dell’Oscurità. E dopo mille piogge. E mille passi io li lasciavo. Una sottile punta di freccia. Dietro di me i Venti che ho abbandonato. E davanti a me, Tu. Iscriviti a: Commenti sul post (Atom).
Mio Piccolo Angelo: maggio 2014
http://pertetommy.blogspot.com/2014_05_01_archive.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. I Talk To An Angel. I talk to an Angel. I do it, sometimes. I talk in a language. That sounds just like chimes. He’s here on my left side. My right’s joining hands. Rain hitting the pavement,. I talk to an Angel. He’s more part of me. His voice in my inside. His eyes always here. He’s gone for a travel. I can’t understand. I walk on the gravel. With flowers in hand. I talk to an angel. E una telefo...
Mio Piccolo Angelo: Buon Compleanno, Poppy bello
http://pertetommy.blogspot.com/2012/09/buon-compleanno-poppy-bello.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. Buon Compleanno, Poppy bello. Per i tuoi 4 anni. Tanti Auguri, piccolino mio. E da quando il tuo papà ha aperto questa pagina che io passo di qui ogni sera a darti un saluto.buonanotte piccolo Tommy e buon compleanno. Ciao piccolo, passo spessissimo anche io a trovarti. Ti invio quattro immensi bacioni! E quattro infiniti abbracci vanno a quella splendida persona del tuo papá! Il Mio Piccolo Angelo.
Mio Piccolo Angelo: Eri per me....
http://pertetommy.blogspot.com/p/eri-per-me.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. Eri per me quel tutto, amore,. Per cui si struggeva la mia anima. Una verde isola nel mare, amore,. Una fonte limpida, un'ara. Di magici frutti e fiori adornata:. E tutti erano miei quei fiori. Ah, sogno splendido e breve! Stellata speranza, appena apparsa. Una voce del Futuro mi grida. Ma è sul Passato. Che la mia anima aleggia. Tacita, immobile, sgomenta! Perchè mai più, oh, mai più per me. I tal...
Mio Piccolo Angelo: Il Viaggio
http://pertetommy.blogspot.com/2010/07/il-viaggio.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. Amore Mio Bello,. I 18 mesi che hai trascorso con noi sono stati il più bel viaggio della mia vita. Ma oggi pensavo soprattutto all'ultima parte, le tue ultime 3 settimane di vita. Dal 13 Aprile, quando tutto è cominciato, quando sono tornato subito a casa dal lavoro e ti abbiamo portato in Ospedale, a Desio. Quella mattina è cominciata la parte più sofferta e dolorosa del nostro viaggio insieme.
Mio Piccolo Angelo: settembre 2013
http://pertetommy.blogspot.com/2013_09_01_archive.html
Dedicato a te, Tommy, Mio Piccolo Cucciolo. Sei venuto a riempirci di gioia, ci hai lasciato troppo presto. La tua primissima foto, il giorno stesso in cui sei nato. 5 anni, saresti stato quasi un ometto adesso. 5 rose bianche per te: non è un gran regalo quello che ti ho portato, ma sono comunque bellissime. Auguri, Amore Mio. Link a questo post. Iscriviti a: Post (Atom). Il Mio Piccolo Angelo. Tommy, Cucciolo Mio. Buon Compleanno, Tommy. Buon Compleanno, Cucciolo. I Talk To An Angel. Piccolo Amore Mio,...
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XLP Research Trust | Home
X-linked lymphoproliferative syndrome (XLP), which is also known as Duncan’s syndrome, is a rare always fatal disease that affects only boys. To date only about 100 families and 400 boys have been diagnosed worldwide. It is likely, however, that there are many more cases where the correct diagnosis has not been made. However with advances in genetics a potential cure may now only be a few years away. More information on XLP. Founded in 2005, the XLP Research Trust exists to. My name is David Rodgerson, I...
XLP Research Trust | Home
X-linked lymphoproliferative syndrome (XLP), which is also known as Duncan’s syndrome, is a rare always fatal disease that affects only boys. To date only about 100 families and 400 boys have been diagnosed worldwide. It is likely, however, that there are many more cases where the correct diagnosis has not been made. However with advances in genetics a potential cure may now only be a few years away. More information on XLP. Founded in 2005, the XLP Research Trust exists to. A bone marrow transplant could.
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