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  • December 2012 Update | Global Foundation For Peroxisomal Disorders
    Recent Articles Pound the Pavement for Peter 2015 High School Robotics Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps December 2012 Update Follow the link below to read the GFPD s

    Original URL path: http://www.thegfpd.org/december-2012-update (2015-03-27)
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  • Invitation to FDA Public Meeting on Neurologic Manifestations of Inborn Errors of Metabolism | Global Foundation For Peroxisomal Disorders
    information about attending the meeting in person or via webcast on June 10 2014 Dear patient stakeholder We invite you to attend an upcoming public meeting on neurologic manifestations of inborn errors of metabolism as part of FDA s Patient Focused Drug Development initiative The goal of the meeting is to hear patient perspectives on the impact of neurologic manifestations of inborn errors of metabolism on daily life as well as patient views on treatment approaches for neurologic manifestations of inborn errors of metabolism Date June 10 2014 Time 9 00 am 1 00 pm Location FDA White Oak campus at 10903 New Hampshire Avenue Silver Spring MD Remote access will be available via live webcast for those unable to attend in person The patient voice is integral to FDA s Patient Focused Drug Development initiative Patient representatives such as caretakers or leaders of support groups are also welcome to attend and share their perspectives We encourage you to spread the word to your peers patients and other patient stakeholders by forwarding on this email and sharing through social media In person and web attendees can register here www patientfocusediem eventbrite com Please register by May 27 2014 Patients and

    Original URL path: http://www.thegfpd.org/invitation-to-fda-public-meeting-on-neurologic-manifestations-of-inborn-errors-of-metabolism (2015-03-27)
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  • NORD Salutes Congress for Passing Pediatric Research Bill! | Global Foundation For Peroxisomal Disorders
    Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps NORD Salutes Congress for Passing Pediatric Research Bill The National Organization for Rare Disorders NORD has announced its support for Congress passage of the National Pediatric Research Network Act which promotes medical research on pediatric

    Original URL path: http://www.thegfpd.org/nord-salutes-congress-for-passing-pediatric-research-bill (2015-03-27)
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  • NORD Provides New State Insurance Information | Global Foundation For Peroxisomal Disorders
    School Robotics Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps NORD Provides New State Insurance Information The National Organization for Rare Disorders NORD has issued an interactive map detailing state specific

    Original URL path: http://www.thegfpd.org/nord-provides-new-state-insurance-information (2015-03-27)
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  • The Voice’s Kiki deVille: ‘I’ve learnt it’s OK to laugh again’ | Global Foundation For Peroxisomal Disorders
    a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps The Voice s Kiki deVille I ve learnt it s OK to laugh again Read about The Voice contestant and PBD mom Kiki deVille s experience with her son Dexter who

    Original URL path: http://www.thegfpd.org/the-voices-kiki-deville-ive-learnt-its-ok-to-laugh-again (2015-03-27)
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  • Pound the Pavement for Peter 5k a HUGE Success! | Global Foundation For Peroxisomal Disorders
    Robotics Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Pound the Pavement for Peter 5k a HUGE Success Congratulations to the Pound the Pavement for Peter team for another successful 5k

    Original URL path: http://www.thegfpd.org/pound-the-pavement-for-peter-5k-a-huge-success (2015-03-27)
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  • Madeline Holt in the News | Global Foundation For Peroxisomal Disorders
    News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Madeline Holt in the News Sixteen month old Madeline Holt is in the news along with her mother Meagan Meagan is the 2014 Snohomish County March for Babies Ambassador in Washington state Read about the Holt family here http edmondsbeacon villagesoup com p

    Original URL path: http://www.thegfpd.org/madeline-holt-in-the-news (2015-03-27)
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  • GFPD Family Profiled on CutePotato.com | Global Foundation For Peroxisomal Disorders
    GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps GFPD Family Profiled on CutePotato com In honor of World Rare Disease Day blogger Jennifer Hazard wrote about her nephew Jack and his life with PBD ZSD on her website Cute Potato http cutepotato com 2014 02 28 show

    Original URL path: http://www.thegfpd.org/gfpd-family-profiled-on-cutepotato-com (2015-03-27)
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