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  • SB related organisations directory project

    We need everyone to help us create a comprehensive global directory of organisations relevant to Spina Bifida and related conditions.

    We need at the very least the name and website but ideally you should say what its purpose is (e.g. Is it a national sb association, local parenting support group, political lobby, etc.) what geographic area it operates in as well as the type of org (non-profit, club, private company, etc.).

    Once we have a reasonable amount of info I will edit, sort, tabulate and arrange publication. (Barb we need the wiki.)
    Roger
    Sumus semper in excretum sed alta variat!

  • #2
    Two i know of:

    SASBAH - covers the Sussex are of the uk: http://www.sasbah.org.uk/

    And the national organisation: http://www.asbah.org/

    Im sure there are lots of links on the national organisations site for other regional groups.
    Best regards
    Oliver H

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    • #3
      The two main ones here in OZ, from these you can get all there is to know here, stats', SB assoc', general info' to a free map to every public toilet in OZ.

      'Australian Spina Bifida and Hydrocephalus Association.'
      contact via the Western Aust Spina Bifida Assoc'
      http://www.sbawa.asn.au/
      e-mail, admin@sbawa.asn.au
      phone, 08 93467520

      'Continence Foundation of Australia'
      http://www.continence.org.au
      e-mail, info@continence.org.au
      IF YOU'RE NOT MAD YOU'RE NOT SANE.

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      • #4
        I have not checked these out, but recently updated and provided by SB Assoc' here in OZ, as of september '09

        International, http://www.ifglobal.org

        United Kingdom, http://www.asbah.org

        Canada, http://www.sbhac.ca

        USA, http://www.sbaa.org

        Hydrocephalus Association
        -San Francisco http:www.hydroassoc.org

        Latex Allergy USA, http://www.latexallergyresources.org

        Latex Allergy Australia, http://www.allergy.org.au/pospapers/pp latex.htm
        IF YOU'RE NOT MAD YOU'RE NOT SANE.

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        • #5
          I can't wait for this!!

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          • #6
            Dodger,

            Absolutely! I am beginning something from a local standpoint. There are no resources in my area. I want to begin a local chapter exactly what I don't know yet logistics haven't really been figured out. However, there needs to be an emphasis on education. When parents to be get the news, as everyone here knows, there are few resources to answer those questions that arise from the parent to be. Additionally, like other organizations, there can be trained counselors whom have SB at the ready to counsel either parents to be or other SB patients whom need assistance, brochures, referral centers, ect.

            How many children were unnecessarily terminated because there was no counterbalance to the brutal news dished out by doctors (understandably so) but cannot answer anything from a life-standpoint? There is a need to have an international resource for this. It will literally save lives, increase awareness and help existing SB patients to avoid complications better.

            Aaaargh! Like I don't have anything else on my plate!

            John

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            • #7
              Here are some links for German-speaking countries:

              German speaking spina bifida / Hydrocephalus support forum:
              www.sternchenforum.de

              German spina bifida / Hydrocephalus association:
              www.asbh.de

              Austrian spina bifida / Hydrocephalus association:
              www.sbho.at

              Swiss spina bifida / Hydrocephalus association:
              www.spina-hydro.ch
              Mom to Amaya *October 4th, 2011 (MMC, HC, clubbed feet...)

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              • #8
                Chai Lifeline has a Spina Bifida support group for Jewish patients and their families.
                chailifeline.org
                nonprofit

                (to access the SB support group, you need to call and dig around a little - or get in touch with me)

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