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Marfan-tastic LifeAbout the non-medical aspects of living with Marfan Syndrome.
http://marfantasticlife.blogspot.com/
About the non-medical aspects of living with Marfan Syndrome.
http://marfantasticlife.blogspot.com/
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Marfan-tastic Life | marfantasticlife.blogspot.com Reviews
https://marfantasticlife.blogspot.com
About the non-medical aspects of living with Marfan Syndrome.
marfantasticlife.blogspot.com
Marfan-tastic Life: February 2009
http://marfantasticlife.blogspot.com/2009_02_01_archive.html
About the non-medical aspects of living with Marfan Syndrome. Thursday, February 26, 2009. My life as a guinea pig. I can't believe it's been almost a month! I never intended to go that long without posting to this blog. Blame it on too many deadlines and too many hours on the road. Even though this blog is more about my life than it is about Marfan's- because other people have that really well covered- I do want to talk a bit about my current experience as a medical guinea pig for Marfan's. So now I'm t...
Marfan-tastic Life: The Cosmo Lesson
http://marfantasticlife.blogspot.com/2009/03/cosmo-lesson.html
About the non-medical aspects of living with Marfan Syndrome. Tuesday, March 31, 2009. Yup I'm gonna die. One of these days. One way or another, it is going to happen. So you know what? While I'm here, I'm going to live, and I'm going to enjoy it. I don't gorge, but I eat good food without worrying about a little bit of fat, a little bit of sugar, or a little bit of salt. I definitely eat dessert. Because I am a Marf? I dunno dearest, I for one, will never be able to call you "Marf". I'm a freelance writ...
Marfan-tastic Life: April 2009
http://marfantasticlife.blogspot.com/2009_04_01_archive.html
About the non-medical aspects of living with Marfan Syndrome. Tuesday, April 28, 2009. I posted a poem on my LJ blog. A few minutes ago, but it, and the article in The Atlantic. That inspired it got me thinking once more about how we seem to have become a risk-averse country and why I am not, or am no longer risk averse. It comes down to this. Life Is. Risky. I don't worry about playing it safe because I know there is no such thing as 100 percent safety. I'd rather Live. Thursday, April 23, 2009. This mo...
Marfan-tastic Life: A Dog's Life
http://marfantasticlife.blogspot.com/2009/04/dogs-life.html
About the non-medical aspects of living with Marfan Syndrome. Wednesday, April 1, 2009. I was watching the vlogbrothers post. This morning, and wham- there it was, about a minute in: "A three-legged dog is the same amount of happy as a four-legged dog." Count me as a three-legged dog. Sometimes you have to make accommodations, and you may end up running at the end of the pack, but the important thing is to run and fetch and do all the things you love. Inspired by Familia Agape. View my complete profile.
Marfan-tastic Life: July 2009
http://marfantasticlife.blogspot.com/2009_07_01_archive.html
About the non-medical aspects of living with Marfan Syndrome. Thursday, July 2, 2009. The river named denial. The average reaction to adversity seems to be to struggle toward acceptance. Maybe because I seem to have been born a contrarian, I struggle toward denial. Honestly, I would like to be able to do denial. I would like to sail up that river:. For now, I'll keep keep paddling, here, where acceptance and denial flow together into the stream of life. Wednesday, July 1, 2009. Today BD (Beloved Daughter...
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marfansyndromex.com
Belangenvereniging voor mensen met het marfansyndroom - Contactgroep Marfan Nederland
Zoek op deze site. Voor leerkrachten: een leerling met marfan. De Contactgroep Marfan Nederland. Is een erfelijke aandoening van het bindweefsel. Bindweefsel komt op veel plaatsen in het lichaam voor. De belangrijkste symptomen zijn te zien aan hart, bloedvaten, ogen en skelet. Een tijdige diagnose is van levensbelang. De Contactgroep Marfan Nederland. Video] Marfan en tandheelkunde. Video] Samen beslissen in de zorg. Video] Invloed van Resveratol op aortaverwijding bij Marfan. Van vrijdag 1 juni tot en ...
Marfanta
10 anys de marfanta.com. Ribera d'Ebre i Priorat. Terra Alta i Matarranya. Baix Maestrat i els Ports. Cop d'Ull / PDFs. Monclús apunta que només Faura es postula com a alcaldable d’ERC a Tortosa. La 74a ExpoEbre creix i s’amplia amb Celebrem. Comença la millora del ferm de l’Eix de l’Ebre entre Jesús i Aldover. Ensurt al centre d'Amposta per un home atrinxerat en un pis. Tortosa encarrega un estudi sobre l’impacte econòmic del turisme. Treballem per la Tortosa de tots i totes. Del desconcert a la ràbia.
MARFANTA.COM
L'Ajuntament de Tortosa adquireix l'antiga clínica l'Aliança. TORTOSA (Baix Ebre).- LAjuntament de Tortosa signarà en els pròxims dies un protocol dintencions per adquirir la Clínica Terres. Salut avala l'adquisició de la Clínica Terres de l'Ebre per l'Ajuntament de Tortosa. El director dels serveis territorials de Salut, Albert Gómez, ha aprofitat aquest dimecres el seu pas per l’informatiu matinal de Canal 21. Sant carles de la ràpita. Tortosa se'n va 'De Quintos al centre'. Suprimir la mancomunitat de...
Marfantag - Die jährliche Veranstaltung für Menschen mit dem Marfan-Syndrom
Marfantag - jetzt auf www.marfan.de. Sie finden alle aktuellen Informationen zum Marfantag und dem Marfansyndrom auf unserer Homepage: www.marfan.de. Marfan Hilfe (Deutschland) e.V. - 23691 Eutin. Kontakt (at) marfan (punkt) de.
Marfan-tastic Life
About the non-medical aspects of living with Marfan Syndrome. Thursday, July 2, 2009. The river named denial. The average reaction to adversity seems to be to struggle toward acceptance. Maybe because I seem to have been born a contrarian, I struggle toward denial. Honestly, I would like to be able to do denial. I would like to sail up that river:. For now, I'll keep keep paddling, here, where acceptance and denial flow together into the stream of life. Wednesday, July 1, 2009. Today BD (Beloved Daughter...
The Marfan Trust charity
Our Staff and Trustees. What is Marfan syndrome? Living with Marfan syndrome. Marfan syndrome in children. Our Staff and Trustees. What is Marfan syndrome? Living with Marfan syndrome. Marfan syndrome in children. The Marfan Trust embarks on raising awareness of Marfan syndrome. To fund medical research projects that aim to aid the diagnosis and treatment of Marfan syndrome patients. To provide peer-to-peer support and medical guidance to those affected and their families. What is Marfan syndrome. The Ma...
marfantrust.org.gridhosted.co.uk
The Marfan Trust | The Marfan Trust is the only Marfan charity in the UK that funds its own laboratory undertaking medical and analytical research so that more is known about Marfan syndrome and its management.
Darr; Skip to Main Content. What is Marfan syndrome? Medical aspects and management. Diagnosis of Marfan syndrome. Living with Marfan syndrome. Marfan syndrome in children. The Sonalee Laboratory, St George’s Hosptial. Sonalee Wish List 2015. Upcoming and Past events. Morgan Cars Rally 2013. Suzuki Project GSX-R1100 2014/2015. Fundraising Corner: ideas and suggestions. Welcome to the Marfan Trust. The Marfan Trust’s three main objectives are:. To fund medical research. And ways to support. We don't mind ...
Marfanův syndrom - Zdravě.cz
Je geneticky podmíněná porucha vazivové tkáně. Tento typ tkáně se vyskytuje všude na těle, proto deformity pozorujeme na kostře, cévách, svalech, očích, kloubech atd. Syndrom se dědí po rodičích, ale může se také objevit nově, z neznámých příčin. Porucha je to hodně vzácná, faktem je, že ne vždy o ní postižený jedinec ví. Marfanův syndrom - příznaky. Dlouhé tenké končetiny, dlouhé a tenké prsty, vychýlení oční čočky, deformace hrudního koše, deformace páteře, hyperelastické klouby, vady na srdci a cévách.
Marfanův syndrom | MarfanůvSyndrom.com
26 září 2016 v 17:00. 22ročník kampaně Brněnské dny pro zdraví 2016. Přednáška pro širokou veřejnost na téma: Marfanův syndrom aneb když výška není jen krása, ale i nemoc. Místo konání: Knihovna Jiřího Mahena, Kobližná 4, Brno. 25 září až 4. října 2015. 21ročník kampaně Brněnské dny pro zdraví 2015. Brněnské dny pro zdraví je kampaň, jejímž cílem je ukázat veřejnosti, jak se dá v Brně žít zdravěji a systematicky ji motivovat k dlouhodobému zájmu o zdraví. 12102013 od 9ti hodin. Poprvé jsem se s tímto poj...
O sdružení | Marfanuvsyndrom
Založit novou webovou stránku nebo e-shop Chci nový web. Kliknutím na televizor otevřete nové okno a potom spusťte krátké video - 83 sekund). Http:/ www.rarediseaseday.org/solidarity. Vzácné onemocnění postihuje méně než jednoho z 2000 lidí, ale není nás vidět. Je více než 6000 vzácných onemocnění. Ta jsou rozdílná, ale čelíme stejným poroblémům. Dohromady jsou nás statisíce milionů lidí po celém světě. Každý z nás je ale skutečný živý člověk. Když budeš chtít, tak nás ale uvidíš. Odůvodnění k dodatku 27).
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