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home [2023/03/03 03:28] – [Dr.Babak Darvish,co-founder of ARM, an awardee of the Jefferson Award] daniel | home [2023/03/03 04:52] – daniel | ||
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- | ====== | + | |
- | Watch our snapshot of who we are, how we began, where research is and how HIBM affects the daily lives of patients. | + | |
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- | {{ vimeo> | + | |
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- | [[http:// | + | |
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- | ====== Middle Eastern Genetic Panel Survey ====== | + | |
- | Synageva BioPharma is a clinical stage biopharmaceutical company dedicated to discovering, | + | |
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- | They have designed a short 10 minute survey to determine the awareness of people in the Persian/ | + | |
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- | We would like to ask your assistance in taking this survey, and in sharing the survey link with your friends and relatives who are of Persian or Persian Jewish descent. | + | |
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- | Please click on the following link to access the survey; | + | |
- | [[https:// | + | |
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- | Thank you in advance for your assistance in participating in and sharing this survey!\\ | + | |
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- | ====== HIBM Sialic Acid Phase II Trial Recruitment ====== | + | |
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- | **Ultragenyx Pharmaceutical** has announced that recruitment has begun for a Phase II Trial study for HIBM patients. | + | |
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- | To be eligible, patients must be between 18 and 65 years of age, must have a documented diagnosis of GNE myopathy (HIBM), must be able to walk 20 meters independently (may use orthotics and assistive devices) and able to comply with all study procedures including fine needle muscle biopsies of the upper and lower extremities at Baseline at 24 and 48 weeks. \\ | + | |
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- | Click [[SIALIC TRIALS]] for more info. \\ | + | |
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- | ====== HIBM Natural History Trial at NIH ====== | + | |
[[http:// | [[http:// | ||
- | A Natural History | + | [[https:// |
- | Myopathy | + | |
- | We are currently screening and recruiting patients for the “Natural History Study | + | The Natural History Study of patients |
- | of Patients | + | |
- | Natural History study is an initiative | + | |
- | in preparation for treatment trials. The goal of this research study is to better | + | |
- | understand the signs, | + | |
- | better tests to measure the progression of the disease. | + | |
- | By participating in this study, you will help to improve our understanding of HIBM, | + | By participating in this study, you will help to improve our understanding of GNE Myopathy disease process, which is an important contribution |
- | which is an important contribution | + | |
- | condition. This study will provide information that will help shape subsequent | + | |
- | investigations of potential treatments for HIBM. | + | |
- | Our timeline includes | + | People eligible to participate in the studies may have travel expenses covered by the NIH, including those traveling form outside the US. Travel and lodging expenses may be paid for a companion if medically indicated. |
- | September 2011 and the Clinical trial of ManNAc in HIBM no sooner than June | + | |
- | 2012. | + | |
- | People eligible to participate in these studies will have travel expenses covered | + | Visit their website! [[https:// |
- | by the NIH, including those traveling form outside the US. Also, travel and | + | |
- | lodging expenses may be paid for a companion, if medically indicated. | + | |
- | Visit their website! http:// | ||
- | \\ \\ | + | ====== Jefferson Award ====== |
+ | [[about_arm: | ||
+ | Dr. Babak Darvish, co-founder of ARM, has received the Jefferson Award. | ||
+ | {{ youtube> | ||
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- | ====== ARM is now on Twitter!! ====== | ||
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- | [[http:// | ||
- | ARM is now on Twitter. Get connected today and tell all your friends! | ||
- | [[http:// | ||
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- | ====== Find us on Facebook and " | ||
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- | [[http:// | ||
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- | **www.facebook.com/ | ||
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- | ARM is on Facebook! Want to help, but don't know how? " | ||
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- | When you " | ||
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- | ====== Middle-Eastern Genetic Panel ====== | ||
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- | **Middle-Eastern Genetic Panel** - The people of Iran and Middle-East have higher risk for specific genetic disorders. We are currently offering | ||
- | or visit: www.hibm.org/ | ||
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- | ====== Jefferson Award ====== | ||
- | [[about_arm: | ||
- | July 22, 09 | ||
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- | Dr. Babak Darvish, co-founder of ARM, has received the Jefferson Award. | ||
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- | Watch the Video Clip [[http:// | ||
LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. | LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. | ||
- | The [[http://abclocal.go.com/kabc/ | + | The [[https://abc13.com/archive/6932384/ | Jefferson Awards ]] is an award organization co-founded by Jacqueline Kennedy-Onassis in 1972 to encourage and honor people for their contributions through community service. It is an organization based on a simple idea -- the belief that one person can make a difference. |
[[about_arm: | [[about_arm: | ||
- | To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish' | + | To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish' |
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