The main objective of Rare Disease Day 2015 is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.
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Rare Disease Day ® 2015 | rarediseaseday.org Reviews
https://rarediseaseday.org
The main objective of Rare Disease Day 2015 is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.
rarediseaseday.org
Rare Disease Day ® 2016 - Article
http://www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease
What is Rare Disease Day? What is a Rare Disease? Raise and join hands! What is Rare Disease Day? What is a Rare Disease? Overview of past Rare Disease Days. Raise and join hands! Sign up for updates. Fill in the form below. To sign up to the latest Rare Disease Day news! Tick to receive news from EURORDIS, organiser of Rare Disease Day. Thank you for signing up! You are almost finished. To complete the subscription process,. Please click the link in the email we just sent you! Pays tribute to the millio...
Rare Disease Day ® 2016 - Article
http://www.rarediseaseday.org/article/what-is-a-rare-disease
What is Rare Disease Day? What is a Rare Disease? Raise and join hands! What is Rare Disease Day? What is a Rare Disease? Overview of past Rare Disease Days. Raise and join hands! Sign up for updates. Fill in the form below. To sign up to the latest Rare Disease Day news! Tick to receive news from EURORDIS, organiser of Rare Disease Day. Thank you for signing up! You are almost finished. To complete the subscription process,. Please click the link in the email we just sent you! What is a Rare Disease?
Rare Disease Day ® 2016 - Find out what is happening in your country
http://www.rarediseaseday.org/events/world
What is Rare Disease Day? What is a Rare Disease? Raise and join hands! What is Rare Disease Day? What is a Rare Disease? Overview of past Rare Disease Days. Raise and join hands! Sign up for updates. Fill in the form below. To sign up to the latest Rare Disease Day news! Tick to receive news from EURORDIS, organiser of Rare Disease Day. Thank you for signing up! You are almost finished. To complete the subscription process,. Please click the link in the email we just sent you! Moldova. Republic of.
Rare Disease Day ® 2016 - Article
http://www.rarediseaseday.org/article/what-is-rare-disease-day
What is Rare Disease Day? What is a Rare Disease? Raise and join hands! What is Rare Disease Day? What is a Rare Disease? Overview of past Rare Disease Days. Raise and join hands! Sign up for updates. Fill in the form below. To sign up to the latest Rare Disease Day news! Tick to receive news from EURORDIS, organiser of Rare Disease Day. Thank you for signing up! You are almost finished. To complete the subscription process,. Please click the link in the email we just sent you! What is Rare Disease Day?
Rare Disease Day ® 2016 - United Kingdom
http://www.rarediseaseday.org/country/gb/united-kingdom
What is Rare Disease Day? What is a Rare Disease? Raise and join hands! What is Rare Disease Day? What is a Rare Disease? Overview of past Rare Disease Days. Raise and join hands! Sign up for updates. Fill in the form below. To sign up to the latest Rare Disease Day news! Tick to receive news from EURORDIS, organiser of Rare Disease Day. Thank you for signing up! You are almost finished. To complete the subscription process,. Please click the link in the email we just sent you! I will be climbing the.
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#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...
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...
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...
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...
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.
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...
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.
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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rarediseasecommunity.net
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Welcome to the Pfizer Rare Diseases Consortium | rarediseaseconsortiumprod
Skip directly to content. Welcome to the Pfizer Rare Diseases Consortium. Welcome to the Pfizer Rare Diseases Consortium, a ground-breaking interaction initially established between Pfizer and our founding collaborators the GMEC. Consortium of six major UK universities. The Pfizer RDC, which was established to accelerate the pace of innovation in delivering medicines for rare diseases, is now expanding beyond GMEC. To engage with additional UK and European academic institutions. Cookie and Privacy Policy.
Cycling to find a cure for rare diseases - Rare Disease Cycling
Million Dollar Bike Ride. Million Dollar Bike Ride. August 16, 2015. August 22, 2015. September 6, 2015. September 20, 2015. AEC v1.0.4. Tanguy takes NUE Series lead w/2nd Place Finish @ Wilderness 101 goo.gl/G1MhqZ. About 2 weeks ago. From Rare Disease Cycling's Twitter. Via Twitter Web Client. Yeager takes the win at Michaux. Harding/Thiemann go 2-3 at Granogue. ow.ly/PXozN. About 3 weeks ago. From Rare Disease Cycling's Twitter. Via Twitter for iPhone. About 2 months ago. Via Twitter for iPhone. Rare ...
国际罕见病日
国际罕见病日 Rare Disease Day. 由罕见病发展中心 CORD 主办的主题为 改变从了解开始 2015国际罕见病日 中国 宣传月启动仪式在北京凯德晶品购物中心隆重举行。 活动地图 Mapping Our Actions.
Rare Disease Day レアディジーズデイ 世界希少・難治性疾患の日
Rare Disease Day 開催に向けたご挨拶ならびにご寄付 バッジメンバー のお願い. 本サイトは Creative Commons 3.0の下にリリースされている GLYPHICON.
Rare Disease Day ® 2015
Rare Disease Day 2015, February 28. What is Rare Disease Day? About our official partners. What is a Rare Disease? Living with a rare disease is the theme for 2015. The Official Video for Rare Disease Day 2015. Highlights from past Rare Disease Days. Show your organisation’s support! Raise and Join Hands! Show your solidarity with people living with a rare disease! Share a video or photo of your experience living with a rare disease. Register your event details. Join us on our Social Media! PRIMERAS JORN...
Rare Disease Day - Home
Explore the Rare Disease Day website. How to get involved. New Zealand Rare Disease Day. And help raise awareness and funds for support groups and research throughout the country. People with rare diseases in New Zealand are few and far between, so we like to think of them as. By working together, we know we have a greater chance of our. Being seen and heard. LAM Trust Movie Event. Bridgeway Theatre, North Shore. Rare Disease Dress Up Day. Bayfield Early Education Centre. Katie’s brother, Caleb, and sist...
Международный день редких болезней
Международный день редких болезней. До дня редких болезней осталось. Открытое заседание общественных организаций по защите прав пациентов при Министерстве здравоохранения Российской Федерации, посвященное Международному Дню редких заболеваний. 25 февраля, Москва. О дне редких заболеваний. Представителей Законодательного собрания России, Минздрава России, Департамента здравоохранения г. Москвы, Минздрава Московской области, общественныых деятелей. Разработка сайта: DriveLab.ru.
Rare Disease Day USA | Alone we are Rare. Together we are Strong.
OFFICIAL U.S. SPONSOR. February 29, 2016. About Rare Disease Day. 2015 Recap & Press Coverage. Goals and Plans for 2015. Successes from Past Years. History of Rare Disease Day. What is a State House Event? Press Kit and Resources. Partners & Supporters. Handprints Across America 2015. Handprints Across America 2014. Handprints Across America 2013. Countdown to Rare Disease Day! Tell your story or follow ours in our active online community. What's Happening in Your State? From State House events.
rarediseaseday2012fr.weebly.com
Rare Disease Day_FR - Home
Rare Disease Day FR. A propos de RaDiOrg.be. Témoignages de patients atteints de maladies rares et de leurs proches. Avec l'aimable autorisation de la Fondation Roi Baudouin). Pour soumettre vos témoignages, utilisez le formulaire en bas de page. Soumettez vos témoignages. Create a free website. Start your own free website. A surprisingly easy drag and drop site creator. Learn more.
rarediseaseday2012nl.weebly.com
Rare Disease Day_NL - Home
Rare Disease Day NL. Getuigenissen van patiënten en hun familie (met dank aan de Koning Boudewijnstichting). Deel uw getuigenis met het formulier onderaan deze pagina. Create a free website. Start your own free website. A surprisingly easy drag and drop site creator. Learn more.
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