Ifsbh

[sean]

G'day, I've just been looking around at what's going on nationally here in OZ.
Signed up for a couple of newsletters. It seems there are only 3000 people out of 21million here in OZ living with SB:33a:
Also found IFSBH, International Federation for Spina Bifida and Hydrocephalus.
Interesting, probably telling you something you already know, If not check it out. sean.

[smoop]

I met the president of that organization, Pierre, while attending the National Spina Bifida conference in Orlando, Fl. We actually shared a taxi to the airport from the hotel and had quite a nice chat. Prior to attending the conference I had never heard of his organization.

[sean]

The world is getting smaller in many ways. Wouldn't it be great to have a one stop directory of every organisation globally, to do with SB instead of having to search and stumble across them. Just a thought, can't imagine by who or how it could happen.

[Dodger67]

By who? Who else but us of course.
How? Start by posting the contact details of all the relevant orgs you know of or discover while websurfing. I will start a new sticky topic in the "General" section for gathering the info.

[Moon2810]

At the request of Dodger67 I would like to let you know that I am the Communications officer of the International Federation for Spina Bifida and Hydrocephalus (IF), www.ifglobal.org (http://www.ifglobal.org), based in Brussels, Belgium. Formerly the abbreviation was indeed "ifsbh", nowadays the organisation is referred to as "IF".

Our Members page and the Links-page contain many URLs to Spina Bifida associations worldwide.
I realise it is far from complete, since the Spina Bifida Association in America has many, many member organisation and we haven't listed all of those separately.
Feel free to browse and if you know of any associations that would be worthwhile to add, please let me know! My contact information is on the IF website.

[Dodger67]

Thanks for this information.
I have a question for you:
Can IFglobal offer support or advice for groups who want to establish national organisations in countries that don't yet have any formal structures?

You are already aware of the effort in South Africa that I am involved in, but I know that several members of this forum from New Zealand are interested in establishing something there too.

[Moon2810]

People who want to start a Spina Bifida and/or Hydrocephalus support group or a national association are always welcome to contact IF at our "info@" email adress.

IF also offers guidelines on its website: www.ifglobal.org (http://www.ifglobal.org/en/activities.html).

I will also include the direct URLs to the Word-documents here:

Guidelines for National Organisations (http://www.ifglobal.org/images/stories/aboutif/110209%20IF%20Guidelines%20National%20Associations .doc)
Guidelines for Support Groups (http://www.ifglobal.org/images/stories/aboutif/110209%20IF%20Guidelines%20Support%20Group.doc)


Hope this helps!

Btw, one very active person in New Zealand is Lyall Thurston. I will not post his email adress here, but people who want to contact Lyall can send me a private message.

Best regards,
Renée Jopp
IF Communications officer