Tuesday, August 18, 2009

Act of outreach - Ireland

We HPS'ers would like to thank the organizers of the upcoming Connect Albinism event in Northern Ireland. When I found out they had an event coming up, I asked them if they'd be willing to share our brochures on HPS, and they readily agreed. We really appreciate their willingness to help us out.

When Carmen and I were at the recent hematology meeting, we met a hematologist from Belfast who told us he had three HPS patients, and another from a nearby town that had one. I know I have Irish ancestory on my Dad's side - as do several other HPSers. We also have a handful of Irish families on the database, so HPS definately occurs in this population.

We really do appreciate the help building awareness about the syndrome.

Below is the information about the upcoming event.

Connect Albinism Weekend in Northern Ireland

Part of the RNIB NI Vision 4 Life Project (Funded by the Big Lottery)
Share Holiday Village, Lisnaskea, Co. Fermanagh, Northern Ireland (
11th-13th September 2009
Open to children and adults with albinism and their families Details of activities to follow shortly
Cost: £15 for an individual / £30 for a family - includes meals
Booking essential, please contact Niall Dempsey Phone: 02890 329373 Email:

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