Parent Project Muscular Dystrophy's mission is to end Duchenne muscular dystrophy. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.
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Home | duchenneconnect.org Reviews
https://duchenneconnect.org
Parent Project Muscular Dystrophy's mission is to end Duchenne muscular dystrophy. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.
DuchenneConnect Professional Portal | Duchenne and Becker Muscular Dystrophy Professional and Caregiver Resources
DuchenneConnect Professional Portal Duchenne and Becker Muscular Dystrophy Professional and Caregiver Resources. Professional Portal - A resource for researchers and clinicians. The DBMD community needs your help. Register today to join our growing community and encourage your patients to join the international effort to better characterize the community. Learn from the patient community. Review how participants are impacted by DBMD. Reach participants interested in trials. Click to see the benefits of j...
duchenneconnect.org
Duchenne @ PatientCrossroads
https://www.duchenneconnect.org/component/jreporting/default/737.html
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Duchenne @ PatientCrossroads - Participation FAQ
https://www.duchenneconnect.org/homepage/participation-faq.html
Tell me more about how the Registry protects the confidentiality of participants. Your account will be protected by the username and password you select in setting up your account. The Registry has to follow rules to protect information about you. Federal and state laws also protect your privacy. Only the Registry director, Registry coordinators, and key staff at PatientCrossroads have the ability to see your personal information. You will indicate that you agree to participate in the Registry by providi...
Duchenne @ PatientCrossroads - Who We Are
https://www.duchenneconnect.org/homepage/who-we-are.html
As its name implies, DuchenneConnect represents the coming together of a wide range of entities and individuals who recognize the value in pooling their combined expertise and information. The organizers of DuchenneConnect come from leaders in the non-profit sector, government agencies and academic institutions. DuchenneConnect Organizers and Partners. Parent Project Muscular Dystrophy (PPMD). Centers for Disease Control and Prevention (CDC). Emory University, Department of Human Genetics. National Cente...
Duchenne @ PatientCrossroads - Clinical Trial News
https://www.duchenneconnect.org/news/clinical-trial-news.html
FibroGen's MissionDMD Trial Now Recruiting. Join the UCLA Genetic Modifier Study. Participants Needed for Pfizer's Myostatin Inhibitor Trial. BMS Myostatin Inhibitor Trial Now Recruiting. HOPE - Duchenne Trial Actively Recruiting Young Men. Phase 3 Trial Recruiting Non-Ambulatory Boys. Move DMD Trial Now Recruiting. Becker Natural History Study in Need of Participants. ReveraGen BioPharma Announces Start of Phase 1 Trial Of VBP15. Eli Lilly Tadalafil Phase 3 Trial has Completed Enrollment.
Duchenne @ PatientCrossroads - ReveraGen BioPharma Announces Start of Phase 1 Trial Of VBP15
https://www.duchenneconnect.org/news/clinical-trial-news/877-reveragen-biopharma-announces-start-of-phase-1-clinical-trial-of-vbp15.html
ReveraGen BioPharma Announces Start of Phase 1 Trial Of VBP15. This week ReveraGen BioPharma announced the start of a Phase 1, first-in-human, clinical trial of a novel drug, VBP15. Under development for Duchenne muscular dystrophy. VBP15 is a novel delta-9,11 glucocorticoid analogue that will hopefully work as well or better than traditional glucocorticoids. Prednisone, deflazacort) but with an improved safety profile compared to these ‘standard of care’ drugs. And not for individuals with Duchenne.
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Kindergarten Chronicles | halfpastnormal
https://halfpastnormal.wordpress.com/kindergarten-chronicles
Just another Special Needs Parenting site…. About Duchenne Muscular Dystrophy. Adventures of Little Miss Adorable. Halfpastnormal is who we are. Big City to Small Town. Hubby, Me and ADHD. Future Horizons and Sensory World. As a teacher and parent I write about the education system, unschooling and more. I talk about Mr Sensitive’s adventures in Kindergarten, the disconnect between services and needs, and how it can all be better (sort of). Bad Mother: School Events Kill Me Pizza Days and Pasta Nights.
Serious Stuff | halfpastnormal
https://halfpastnormal.wordpress.com/serious-stuff
Just another Special Needs Parenting site…. About Duchenne Muscular Dystrophy. Adventures of Little Miss Adorable. Halfpastnormal is who we are. Big City to Small Town. Hubby, Me and ADHD. Future Horizons and Sensory World. Not all Angels have Wings…. A strong case AGAINST prenatal genetic selection. Although I do try to see lighter side of life, some of the issues and situations we face are quite serious. Here are some links to pages and articles in this blog that attempt to tackle these issues. Enter y...
La Reina del Kaos: PEDIR PERDÓN Y SIN HABLAR
http://lareinadelkaos.blogspot.com/2015/05/pedir-perdon-y-sin-hablar.html
La Reina del Kaos. Este blog esta dedicado a mi porque me lo merezco y a mis amigos porque se lo merecen. Es un regalo de la mente para curar el alma. 2012 Año Internacional de la lectura. Y de las cooperativas. Martes, 26 de mayo de 2015. PEDIR PERDÓN Y SIN HABLAR. Dicen que escribiendo uno se desahoga yo no, pq tengo. Que alguien lo pueda leer al igual q cuando era pequeña y escribía en mi diario.no quería q mi madre o mi padre lo pudiesen leer y supieran mas. Un beso de Lokura. ANTE TODO; POSITIVISMO.
La Reina del Kaos: agosto 2011
http://lareinadelkaos.blogspot.com/2011_08_01_archive.html
La Reina del Kaos. Este blog esta dedicado a mi porque me lo merezco y a mis amigos porque se lo merecen. Es un regalo de la mente para curar el alma. 2012 Año Internacional de la lectura. Y de las cooperativas. Miércoles, 10 de agosto de 2011. TRES AÑOS - HOY. Mamá le da de comer. Comienza a querer comer solo. Le gusta que le aupen y le abracen. Hace cabriolas para que nos riamos. Le gusta la plastilina, pintar, construir. Muestra gran interes por los juguetes: globos, coches, aviones y muñecas. Sonrie ...
La Reina del Kaos: enero 2011
http://lareinadelkaos.blogspot.com/2011_01_01_archive.html
La Reina del Kaos. Este blog esta dedicado a mi porque me lo merezco y a mis amigos porque se lo merecen. Es un regalo de la mente para curar el alma. 2012 Año Internacional de la lectura. Y de las cooperativas. Sábado, 8 de enero de 2011. La última frase del año:. Mamá, en otoño se caen las hojas, en invierno, hay nieve",. Y después de un momento pensando:. No quiero cole, quiero sierra". La frase del día:. Mirando una pieza de un puzle que tenía forma de rayo: "Mira mamá, esta ficha parece una tormenta".
La Reina del Kaos: mayo 2010
http://lareinadelkaos.blogspot.com/2010_05_01_archive.html
La Reina del Kaos. Este blog esta dedicado a mi porque me lo merezco y a mis amigos porque se lo merecen. Es un regalo de la mente para curar el alma. 2012 Año Internacional de la lectura. Y de las cooperativas. Viernes, 21 de mayo de 2010. Bueno, ya me he desahogado. Un beso para Lokura que no se nada de ella desde hace tiempo. Cuidaos. Enlaces a esta entrada. Martes, 11 de mayo de 2010. Gracias Reina por este espacio, seguro que me ayuda a pensar. Enlaces a esta entrada. Miércoles, 5 de mayo de 2010.
Resources | Let's Skip Ahead
http://www.letsskipahead.com/duchenne-resources
Keep me signed in. Exons, Genes, and Proteins. To better understand exon skipping, start with learning the connection between genes and proteins. Explore how exon skipping works and may help boys with Duchenne. A simple-to-use tool helps you understand the link between exon deletions and exon skips. What Is Genetic Testing? A blood test can give families vital information about Duchenne. Should I Get Tested? Make an informed choice about genetic testing by speaking with a genetic counselor. A national no...
Access to genetic testing | Let's Skip Ahead
http://www.letsskipahead.com/access-to-genetic-testing
Keep me signed in. Exons, Genes, and Proteins. To better understand exon skipping, start with learning the connection between genes and proteins. Explore how exon skipping works and may help boys with Duchenne. A simple-to-use tool helps you understand the link between exon deletions and exon skips. What Is Genetic Testing? A blood test can give families vital information about Duchenne. Should I Get Tested? Make an informed choice about genetic testing by speaking with a genetic counselor. If you are in...
Anxiety | halfpastnormal
https://halfpastnormal.wordpress.com/serious-stuff/anxiety
Just another Special Needs Parenting site…. About Duchenne Muscular Dystrophy. Adventures of Little Miss Adorable. Halfpastnormal is who we are. Big City to Small Town. Hubby, Me and ADHD. Future Horizons and Sensory World. Here are my posts about Anxiety. Don`t worry, they don`t bite. A-Words: the Anxiety Series. Three Parts – Three Words. For more click A-words: Anxiety. For more click A-words: Advice. I need to accept the things I cannot change. For more click A-words: Acceptance. When Mr. Sensiti...
TOTAL LINKS TO THIS WEBSITE
115
Stand For Duchenne Canada - Connecting those affected by Duchenne
Get and give support. Disease & Treatment. How Duchenne is inherited. Diagnosis and genetic testing. Clinical trials and patient registries. News & Events. Get & Give Support. STAND FOR DUCHENNE CANADA IS DEDICATED TO SUPPORTING FAMILIES DIAGNOSED WITH DUCHENNE. FDA grants accelerated approval to first drug for Duchenne muscular dystrophy. To receive information and updates from Stand for Duchenne Canada, sign up here. Sign up for email updates. Pin It on Pinterest. Stand For Duchenne Canada.
Ataluren Ya en Aragón
Ataluren Ya en Aragón. SEGUNDA JORNADA DUCHENNE- CASPE. UNA LUCHA CONTRA EL TIEMPO Y EL SÍNDROME DE DUCHENNE. MANIFESTACIÓN 14 DE NOVIEMBRE CASPE. NOS REAFIRMAMOS en nuestra petición al Gobierno de Aragón. LA VIDA DE NUESTROS HIJOS NO TIENE PRECIO. Para reproducir la foto solicitar permisos. Somos Carmen (mamá de Sergio de 7 años) e Irene (mamá de Carlos y Mario de 9 años). Nuestros hijos padecen una enfermedad neurodegenerativa grave llamada Distrofia Muscular de Duchenne. Podría frenar su enfermedad.
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Free genetic testing through Decode Duchenne. Watch our fun video to learn more about DuchenneConnect. Learn about Duchenne and Becker muscular dystrophy. Read our family-friendly FAQs on clinical trials. Log in to chat online with one of our Certified Genetic Counselors. Learn about the many benefits of joining the registry. Click here to register now! Find a Clinical Trial. Easily search our family-friendly summaries of clinical trials and research studies. Visit our Professional Portal. Microdystrophi...
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Duchenne Dash
LONDON TO PARIS IN 24HRS : JUNE 5th 2015. X3ciframe src= x22https:/ player.vimeo.com/video/130519299? Title=0 x26byline=0 x26portrait=0 x22 width= x22500 x22 height= x22281 x22 frameborder= x220 x22 title= x22The Duchenne Dash 2015: London to Paris x22 webkitallowfullscreen mozallowfullscreen allowfullscreen x3e x3c/iframe x3e'. A short video about the long, exhausting and exhilarating Duchenne Dash. See you next year riders. Read Mihir’s Dash blog. WELL DONE TO YOU ALL! An amazing, exhausting acheivement.
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