worldduchenneday.org

World Duchenne Awareness Day

One in 3,500 newborn boys in the world is affected by a rare and fatal disease : Duchenne muscular dystrophy. One in 3,500 might seem a drop in the Ocean of whole human race if we merely focus our attention on statistics. Moving from data to value, the value of life, we can discover that that drop forms a great sea made up of families, researchers, volunteers, clinicians, activists. All of them work day by day to guarantee access to care. To improve research, to educate patients and families. Teun van Wi...

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One in 3,500 newborn boys in the world is affected by a rare and fatal disease : Duchenne muscular dystrophy. One in 3,500 might seem a drop in the Ocean of whole human race if we merely focus our attention on statistics. Moving from data to value, the value of life, we can discover that that drop forms a great sea made up of families, researchers, volunteers, clinicians, activists. All of them work day by day to guarantee access to care. To improve research, to educate patients and families. Teun van Wi...

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World Duchenne Awareness Day | worldduchenneday.org Reviews

https://worldduchenneday.org

One in 3,500 newborn boys in the world is affected by a rare and fatal disease : Duchenne muscular dystrophy. One in 3,500 might seem a drop in the Ocean of whole human race if we merely focus our attention on statistics. Moving from data to value, the value of life, we can discover that that drop forms a great sea made up of families, researchers, volunteers, clinicians, activists. All of them work day by day to guarantee access to care. To improve research, to educate patients and families. Teun van Wi...

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worldduchenneday.org

1

Marcos & Jesús « World Duchenne Awareness Day

http://www.worldduchenneday.org/marcosandjesus

Photo Blog by Marcos & Jesús. Somos Marcos de 8 años y Jesús de 6. Somos de Sevilla, y estamos afectados por la Distrofia Muscular Duchenne. Marcos: Lo que más me gusta es jugar en el parque con mi hermano y los amigos, me encanta el universo, los dinosaurios, la geografía y anatomía. De mayor quiero ser Pediatra. Mi afición es el piano, por lo cuál también estudio música además del colegio. On the weekend we like to go to the movies, to the country side, and the beach. We also like to play with the ...

2

World Duchenne Awareness Day

http://www.worldduchenneday.org/10actions

André Caldas - Conhecer lugares diferentes e experimentar o que a vida nos oferece é o melhor que eu posso viver.-. Gabin Rodrigues de Brito - Quand je serais grand, je serai policier ou dresseur de tigres, ou les deux.-. Maksim Volkov - I love to swim so much even I received a medal and trophy.-. Harry Halpin - I love seeing my grandparents as often as possible.-. Benjamin James - New chapter.-. ADM – Asociación Distrofia Muscular para las Enfermedades Neuromusculares. ADM – El evento. FFM – Foren...

3

World Duchenne Awareness Day

http://www.worldduchenneday.org/patronage

High Patronage of the European Parliament. EU effort is focused on:. Improving recognition and visibility of rare diseases. Ensuring that rare diseases are adequately coded and traceable. In all health information systems. Supporting national plans for rare diseases. In EU member countries. Strengthening European-level cooperation and coordination. Creating European reference networks. Linking centres of expertise and professionals in different countries to share. Supporting rare diseases registries.

4

Hazem Mahdy « World Duchenne Awareness Day

http://www.worldduchenneday.org/hazem-mahdy

Photo Blog by Hazem Mahdy. اسمى حازم، عندي تسع سنوات، من مصر. عندي اختين اكبر مني نهاد وريهام. بحب السباحة ولعبتي بينوكيو. حلمي اكون طيار و الف بلاد العالم. My name is Hazem, I am 9 years old. I am from Egypt and I have two older sisters, Nehad and Riham. I like to swim and to play with my toy Pinocchio. My dream is to become a pilot and to travel all over the world. ADM – Asociación Distrofia Muscular para las Enfermedades Neuromusculares. ADM – El evento. Duchenne Parent Project Belgium. European Allia...

5

Elias Alejandro Carbajal « World Duchenne Awareness Day

http://www.worldduchenneday.org/elias-alejandro-carbajal

Photo Blog by Elias Alejandro Carbajal. Hola, mi nombre es Elias Alejandro Carbajal, tengo 14 años, me dicen Ale. Vivo en Olavarría provincia de Buenos Aires Argentina. Voy a la escuela secundaria, estoy en 3 año. Mi familia está compuesta por mi mamá Verónica, mi papá Pablo y mis dos hermanas Lourdes y Fátima. Me gusta mucho cocinar y tomo clases de cocina. ADM – Asociación Distrofia Muscular para las Enfermedades Neuromusculares. ADM – El evento. Duchenne Parent Project Belgium. Little O against DMD.

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superwielen.wordpress.com

superwielen – Mijn papa heeft superwielen.

https://superwielen.wordpress.com/author/superwielen

Mijn papa heeft superwielen. De kunst van het rugzak-dragen. Open brief aan Bart De Wever. Deze opinie is gepubliceerd in januari 2017 op http:/ www.beslistfeminist.be/. Dat mannen altijd al de baas hebben gespeeld over vrouwen! Ah, dat dus. Ja, nu ik er bij stilsta, eigenlijk wel ja. Komt dat door die bloemen? In een mum van tijd werd mijn Star Trek-idealisme herleid tot zogenaamd ‘mansplaining’. Dat fenomeen treedt op als ‘ware feministes’ geen argumenten meer hebben om jouw visie op gelijkwaardigh...

apn.pt

APN | Associação Portuguesa de Neuromusculares

http://apn.pt/apn

Composição dos Corpos Sociais. Inquérito sobre o impacto das doenças raras na vida quotidiana! 2 de Agosto de 2016. A EURORDIS (Aliança Europeia de Associações de Doenças Raras) lançou um novo inquérito sobre o impacto das doenças raras na vida quotidiana. Pode participar no inquérito, que se encontra aqui, e incentivar os seus amigos, a fazê-lo também. O inquérito está disponível em 23 línguas. Podem participar neste estudo doentes, pais . Inquérito sobre o impacto das doenças raras na vida quotidiana!

sos-duchenne.ch

Aktuelles – SOS Duchenne

http://www.sos-duchenne.ch/aktuelles-2

Von „A“ wie Amedisli bis „Z“ wie Zwetschgenconfi. 12 November 2016 von 10:00 bis 17:00 Uhr. 13 November 2016 von 11:00 bis 16:00 Uhr. Am Sonntag-Gottesdienst um 10:00 Uhr für Gross und Chlii, mit dem 3. Kl. -Unti. Mittagessen ab 11:30 Uhr – Kaffee und Kuchen. Genähtes, Gestricktes, Schönes aus Glas, Schmuck, kleine Geschenke, Brot, Wurst, Käse, Zopf. Erlös zugunsten von SOS Duchenne – Muskeldystrophie Duchenne bei Kindern. Kampf um Anerkennung der seltenen Krankheit Duchenne. Wussten Sie, dass Duchenne-K...

treat-nmd.eu

TREAT-NMD : Advancing diagnosis, care and treatment for people with neuromuscular diseases around the world.

http://www.treat-nmd.eu/home.php

All about the network. Network Chair and Vice-Chair. About the TREAT-NMD network. Donate to the TREAT-NMD Alliance. Nominations for Executive Committee members. Draft of EU data protection regulation. Meetings and events calendar. Submit a newsletter article. Cookies and privacy policy. Neuromuscular care and trial centres. Care and trial site registry. What is a patient registry? List of registries by disease. Principles of a review. Future meetings and events. NMR (MRI and MRS). Why use the BioBank?

godydesign.cz

Svalová dystrofie - novinky | Godyho blog

http://www.godydesign.cz/svalova-dystrofie/novinky

Raquo; Svalová dystrofie - novinky. Svalová dystrofie - novinky. Rakousko: Márovi 1 Francie: Márovi 2 Francie: Márovi 3. Cestování s J iřím Márou. Na dýchacím přístroji. Celý záznam z nedělního pořadu Objektiv. Odkaz na pokračování článku). Má u mě velký obdiv i s jeho rodinou, jelikož vím co to obnáší za přípravy a to maximálně jezdím po Liberecku. Po, 15/08/2016 - 23:01. FN Motol - vernisáž výstavy Žijeme s vámi. Út, 19/04/2016 - 21:47. 942 den - 29. února 2016 - NOC OSCARŮ A POKLIDNÉ PONDĚLÍ. Třinácti...

laforcedmd.com

Blog - La Force DMD

http://laforcedmd.com/blogue

Antoine le 1er IRONKIDS La Force. Subscribe to our Newsletter. Does your child have a specific genetic mutation for DMD? What You Need to Know about Registries. What’s your genetic profile? Which treatment and clinical research targets your genetic mutation? How can you access a new treatment? How do researchers test new treatments? Understanding what happens with new treatments. How are drugs approved for use in Canada? Who decides to reimburse drug costs? Subscribe to our Newsletter. October 24, 2016.

superwielen.wordpress.com

september 2016 – Mijn papa heeft superwielen.

https://superwielen.wordpress.com/2016/09

Mijn papa heeft superwielen. De kunst van het rugzak-dragen. Open brief aan Bart De Wever. Ik ken heel veel meisjes die heel erg triest worden als ze zich hun vaders verjaardagscadeautjes herinneren. Heel veel mannen die boos worden als ze aan hun ouders denken. Het is ontroerend hoe eerlijk mensen zijn als je dat zelf ook bent. OKE FUCK IT dan schrijf ik maar stomme blogberichten op een stomme blog. Oké emotie? Toch geen kat die het leest. Katten kunnen niet lezen. Hoe het voelt om vrij te bewegen?

duchenne.nl

Wat jij kunt doen voor jongens spierziekte Duchenne Spierdystrofie - Duchenne Parent Project

http://www.duchenne.nl/wat-kun-jij-doen

Deelnemers Nijmeegse Vierdaagse laten zich sponsoren voor Duchenne. Wat kun jij doen. Fiets of sponsor Duchenne Heroes. Fiets of sponsor Ride New York. Lever je oude telefoon in. Sponsor of kom zelf in actie. Koop online via SponsorKliks. World Duchenne Awareness Day. Fiets of sponsor Duchenne Heroes. Fiets ook mee, schrijf je hier. Direct in, individueel of als team. Of laat je informeren op de Duchenne Heroes website. Op de Facebook pagina van Duchenne Heroes. Sponsor een team of ga mee als vrijwilliger.

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World Duchenne Awareness Day

One in 3,500 newborn boys in the world is affected by a rare and fatal disease : Duchenne muscular dystrophy. One in 3,500 might seem a drop in the Ocean of whole human race if we merely focus our attention on statistics. Moving from data to value, the value of life, we can discover that that drop forms a great sea made up of families, researchers, volunteers, clinicians, activists. All of them work day by day to guarantee access to care. To improve research, to educate patients and families. Teun van Wi...

worldduchenneday.org

World Duchenne Awareness Day

One in 3,500 newborn boys in the world is affected by a rare and fatal disease : Duchenne muscular dystrophy. One in 3,500 might seem a drop in the Ocean of whole human race if we merely focus our attention on statistics. Moving from data to value, the value of life, we can discover that that drop forms a great sea made up of families, researchers, volunteers, clinicians, activists. All of them work day by day to guarantee access to care. To improve research, to educate patients and families. Teun van Wi...

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