Sunday, March 4, 2012

February at IPWSO

February has been busy, as usual.  We have had several requests for help and been able to send information and network with other professionals in a bid to help our families across the world.

A 26 yr old woman with PWS living in Kuwait who has had little or no support throughout her life.  At this time we don’t have educational material in Arabic, so we contacted one of our consultants in the States who is now following this case and supporting the medical professionals.  We had a similar case in Sudan which has brought up the same problems of having no educational material in Arabic available yet.

We sent information to a doctor in New Delhi about bariatric surgery in PWS, and supported another enquiry from India with a free diagnosis at BIRD for a 20 year old patient with a clinical diagnosis of PWS.  Our professional delegates in Lithuania and also Guatemala requested instructions on sending blood samples to our lab in Italy for a suspect case of PWS. 

In Malaysia, we were delighted to learn of the first gathering of PWS families in Kuala Lumpur on 19th February.  This coincided with a new contact from Malaysia needing help and we were able to put them in contact with our professional delegate, and the new family gathering.  They were delighted and relieved as the only information they’d been able to receive was in Singapore, which meant the financial cost to the family was quite high.  

We had a request for information for medical references from an English family living in Dubai, butthis is another area where we are in the early stages of trying to build professional networks.  We sent her our packages of information.  Other educational and support information was sent to Porto Rico where they are keen to establish a parent support group in her country, and educational information was sent to the PWS Association in Colombia.
Our parent delegate in Spain put us the following question: ”We have problems here in Spain because some doctors do not allow GH therapy on several children with PWS that are only 11-14 years old. What is happening in the rest of Europe or the world? Do you know?”  His request was sent out to most of our member who immediately replied to him.

On Leap Day, February 29th, BIRD organised a wonderful event in a beautiful theatre in Vicenza (Italy) to celebrate the International Rare Diseases Day.  Over 1,000 students and their teachers from local high schools participated.  Giorgio gave a short talk about his experience as a parent, then sang "Ich Auch" (listen here) at the end, with great success!
Finally, we are indebted to our wonderful supporters who have lit candles to help IPWSO continue its work across the world – we thank you so much for your graciousness and generosity.  You can check on the candles by going to our Light A Candle for IPWSO page.


One of IPWSO's three information packages:  General Awareness, Medical Awareness, and Crisis Intervention

Invoices for membership fees 2012 have been sent out, and the following member countries are now subscribed for this year:
  • Australia
  • Finland
  • France
  • Germany
  • New Zealand
  • Norway
  • Slovakia
  • USA

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