The Angelman Network and Rare Disease Day gatherings
The first social gatherings of families, were held in February 2010, (in both Auckland and Christchurch), in response to World Rare Disease Day. Our wish is to continue to gather together on this commemorative date, every year; to raise awareness for AS, to support our families, and also to network with families affected by other rare conditions.
Link to NZORD: the New Zealand Organisation for Rare Disorders, which provides New Zealand’s central starting point for information about rare diseases: http://www.nzord.org.nz/
Link to the 2012 RDD: Rare Disease Day NZ
NZ RARE DISEASE DAY GATHERINGS:
SOUTH ISLAND: The Angelman Network in Canterbury will be having its first gathering for the year – an opportunity to catch up and share.
Date: Saturday 25th of February from 2 – 4:30pm Venue: 28 O’Connor Pl, Burnside, Christchurch Hosted by Peter and Jeanne Coker @ their home. PH:03-358 5083 Link to MAP Bring a plate to share for afternoon tea. Please bring swimwear for a dip in the spa pool.
NORTH ISLAND: Our first Family Gathering this year, is a relaxing picnic lunch!
Date: Sunday 26th Feb, from 11am – 2pm Venue: PHAB building, 8 Auburn Street, Takapuna, Auckland Link to map: http://events.stuff.co.nz/venue/phab-youth-space-north-shore-takapunaBring your own picnic lunch and drinks – music and some snacks will be supplied. (and tea/coffee for the oldies). This venue is ideal as it is a fully fenced play area with wheelchair access, bathrooms and a kitchen. The outdoor area is spacious and we hope to have face painting, bubbles, balloons and some games on hand, to ensure that all are kept busy and entertained. There is also a large indoor area should the weather not play along on the day. Siblings, family and friends are welcome to join us!
Ursula will also share a little about her recent trip to Chicago and some thoughts about the future for our angels in NZ.
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Auckland families celebrating RDD 2012
Nine AS families were represented at a family gathering at Western Springs Reserve
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TAN Mission Statement
“Connecting those affected by Angelman Syndrome”
We do this by
- Accessing and distributing accurate information about Angelman Syndrome sourced locally and internationally
- Helping other Angelman parents and families to be connected and to feel valued and supported
- To raise awareness of Angelman Syndrome in New Zealand among clinicians, therapists, schools, agencies and the community
- Pursuing opportunities to support networking and research, relating to Angelman Syndrome.
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