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The following are links which provide excellent
information about Pompe Disease


For something really cool, check out this video on Youtube!
This is what is known as a "Flash Mob"

Picture
Genzyme has a shared commitment with the worldwide rare disease community: to raise the awareness of rare diseases.

On May 15th 2011 the Dutch Rare Disease Day was celebrated in Amsterdam. A big surprise was planned for all participants. The Dutch Genzyme team, in close collaboration with the organizing committee, had organized an unannounced spectacular end to the meeting, a so called flash mob.

Top choreographer Gerald van Windt, 45 professional dancers, 'The Voice of Holland' stars Shary-An and Wiep, and 'So You Think You Can Dance' finalist Natascha gave a spectacular performance to support the rare disease day theme: 'Rare but not alone'


New Zealand

NZPN
New Zealand Pompe Network

MDA
Muscular Dystrophy Association of NZ

LDNZ
A support group for families affected by lysosomal storage diseases

NZORD
New Zealand Organisation for Rare Disorders


International


Clinical Trial Information
ClinicalTrials.gov is a registry and
results database of federally and privately supported clinical trials which are conducted in the United States and around the world. This website is a MUST to visit, because there are Kiwis who have taken part in these trials.  If you can't get help in NZ, try this website!

GSDnet
Glycogen Storage Disease Network

Lysosomal Storage Disease Program
Massachussettes General Hospital

Genetics Home Reference
Your Guide To Understanding Genetic Conditions

Mutations in Human Acid Alpha-Glucosidase
For the Ultra Geeks among us!

Pompe Genetic Disease Resources

About.com Rare Diseases

Personal Websites

Monique

Maddie

Zoe






International Patient Groups


APA
Australian Pompe Association

IPA
International Pompe Association

AMDA
Acid Maltase Deficiency Association

Pompe Canada

United Pompe Foundation

Thank you for visiting us @ NZPN