gyncsm.blogspot.com
#gyncsm Community: September 2016
http://gyncsm.blogspot.com/2016_09_01_archive.html
A community for those impacted by gynecologic cancer. Est. 2013. Wednesday, September 21, 2016. TIL - What We've Learned in the Past Year. If you have joined us for any of our chats you know that for the last ten minutes or so of each chat we ask participants to complete the phrase, Today I learned. which we fondly call TIL. Since we celebrated our third anniversary this month, we thought we would share some of those completed phrases from each of the past year's chats. October 2015 Open Mic. January 201...
erdheim-chester.org
Treatments
http://erdheim-chester.org/treatments
New ECD trials opening! Follow the link below for "Clinical Trials for ECD Treatment" to learn more about the new trials accepting ECD patients. How is Erdheim-Chester Disease Treated? Because of the rarity of this disease, clinical trials. Interferon-alpha, normally considered the “first-line” of treatment, with a number of papers available in www.pubmed.gov. For more papers describing interferon treatment for ECD, see the Technical Papers. BRAF-inhibitors (vemurafenib, dabrafenib). Is now open in the U...
test.ph-vzw.be
Leven met PH | Pulmonale Hypertensie Hypertension Pulmonaire
http://test.ph-vzw.be/nl_NL/leven-met-ph
Pulmonale Hypertensie Hypertension Pulmonaire. Patiëntenvereniging – Association de patients. Samen sterk – Forts ensemble. Gezamenlijke site PH Belgium (PH vzw) / HTAP Belgique - site commun HTAP Belgique / PH Belgium (PH-vzw). The cost of life, hoeveel mogen medicijnen kosten? Algemene vergadering PH Europe Barcelona. Bevraging over kinderen en ziekenhuisopname (oproep VPP). Van 40 ontvangt u van ons een fiscaal attest. A partir de 40 nous vous ferons parvenir une attestation fiscale. Add to Timely Cal...
test.ph-vzw.be
Wat is PH? | Pulmonale Hypertensie Hypertension Pulmonaire
http://test.ph-vzw.be/nl_NL/wat-is-ph
Pulmonale Hypertensie Hypertension Pulmonaire. Patiëntenvereniging – Association de patients. Samen sterk – Forts ensemble. Gezamenlijke site PH Belgium (PH vzw) / HTAP Belgique - site commun HTAP Belgique / PH Belgium (PH-vzw). The cost of life, hoeveel mogen medicijnen kosten? Algemene vergadering PH Europe Barcelona. Bevraging over kinderen en ziekenhuisopname (oproep VPP). Van 40 ontvangt u van ons een fiscaal attest. A partir de 40 nous vous ferons parvenir une attestation fiscale. Op zaterdag 10 en...
haleyandpoppy.com
Emily & Haley & Poppy: Update on the Girls and an Upcoming Project
http://www.haleyandpoppy.com/2012/11/update-on-girls-and-upcoming-project.html
Emily and Haley and Poppy. Monday, November 12, 2012. Update on the Girls and an Upcoming Project. Editor's Note: It has been a while and it is about time to update on the girls and announce a new venture we are about to undertake. Born: January 4, 2007. Haley is six and stunningly beautiful, has a rare genetic disorder called CDKL5. And , in all likelihood. Never walk or talk, but communicate she will when her new computer arrives. Emily is 2 and lost all but 10cm -. Severally affected short gut syndrome.
cphawareness.org
March | 2015 | Alexandria's Foundation
http://cphawareness.org/2015/03
There are the isolated moments when an unexpected happiness hits. I scrolled down and found they were followers of Alexandria’s Foundation page! Sunday night we received a short email from the pulmonologist, sharing an image that her daughter had put together of pictures of Alex with an incredibly kind reflectionabout a girl she had never met! One short year ago…. Our faith informs us that Alex’s death was not random. However, on the human side of the equation, children’s pulmonary hypertension is a ...
associazionemiasteniagravis.it
La nostra Associazione - Associazione Miastenia Gravis ONLUS
http://www.associazionemiasteniagravis.it/la-nostra-associazione
Diventa un nostro socio. Dott Michele Carrozzo, biologo nutrizionista. Benvenuti nel nostro sito. Sono Antonia Occhilupo, Presidente dell’AMG ONLUS di Lecce, affetta da Miastenia Gravis. L’obiettivo dell’Associazione è quello di sostenere i pazienti con Miastenia Gravis, malatita di tipo autoimmunitario, peraltro ancora non riconosciuta tra le malattie rare. 1 Far conoscere a cittadini e sanitari la Miastenia Gravis, malattia rara e spesso misconosciuta;. 5 Organizzare eventi culturali e ricreativi volti...
hnpp.info
Welcome to Hnpp UK
http://hnpp.info/index.html
Comprehensive Information About HNPP. The CMT-UK International Website - info About HNPP and Other resources. HMSN - HNPP info at NDC, Washington University, St. Louis, USA. US National Library Of Medicine - Genetics Home Reference. GeneClinic HNPP review (05). HNPP:Recent Studies - PubMed. An International Hnpp Yahoo Email Group. HNPPHELP faceboo group (login required). Hereditary neuropathy and CMT Facebook Group - Membership Required. Charcot-Marie-Tooth Association US Forums. CMT and HNPP - Blogs.
losvideosderosa.blogspot.com
Los vídeos de Rosa: febrero 2014
http://losvideosderosa.blogspot.com/2014_02_01_archive.html
Los vídeos de Rosa. Mis vídeos, vuestros vídeos. Vídeos que quiero compartir con vosotros. Mi regalo para ti. Visita el blog de Rosa. Jueves, 27 de febrero de 2014. Planta tu semilla de esperanza. Mañana día 28 es el Día Mundial de las Enfermedades Raras,. Se estima que en España hay 3 millones de afectados por una enfermedad rara. El lema de este año es Educar en Enfermedades Raras, una materia de todos. FEDER, la Federación Española de Enfermedades Raras. Página de información de la FEDER. Planta tu se...
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