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The Penguin Café is a discussion forum for Glycoprotein Storage Diseases and designed to enable people from around the world to connect with one another in order to further understanding of these very rare inherited diseases. This forum is a service to the public from ISMRD: the International Advocate for Glycoprotein Storage Diseases.
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Flying School
Before you can fly (yes, our penguins can most certainly fly!) you need to know how to operate the controls. The topics below will help you prepare to use the various boards within the Penguin Café.
Just the FAQs Please!
NEW VISITORS START HERE! ~ Frequently Asked Questions, Board Basics and Guidelines
3 4 04-20-04  07:04 am Paul Murphy
News & Updates
Postings from the Café Administrator about recent improvements and enhancements or items of interest relating to ISMRD.
31 19 09-27-12  01:32 pm Jenny Noble
Penguin Cafe Disclaimer and Terms of Use
Please read ISMRD's disclaimer about use of public forums such as the Penguin Cafe prior to using. Thanks!
1 2 04-21-04  03:00 pm Paul Murphy
The Crèche
Private discussion area for families who have a loved one diagnosed with one of the Glycoprotein Storage Diseases. Contact the Board Administrator to be given access.
Disease Specific Colonies
Public discussion area relating to each of the Glcyoprotein Storage Diseases. Ask questions, seek help and post resources for a particular disease.
Adelie Colony: Alpha and Beta Mannosidosis 368 32 01-24-12  04:09 pm Kathy Shepard
Chinstrap Colony: Aspartylglucosaminuria 0 1 04-15-04  07:18 pm  
Galapagos Colony: Galactosialidosis 1 2 11-12-11  03:12 pm Jenny Noble
Gentoo Colony: Schindler Disease 0 1 04-15-04  07:19 pm  
Humboldt Colony: Fucosidosis 15 4 03-25-10  01:09 pm Terri Klein
King Colony: Mucolipidosis II & III 10443 617 07-11-13  02:49 pm Susan M. Kester
Magellenic Colony: Sialidosis 0 1 04-15-04  07:18 pm  
The Huddle
Emperor Penguins mass together in a circular group called a "Huddle," wherein they exhibit extraordinary acts of cooperation in the face of a common hardship (the harsh Antartic winter). In the Penguin Cafe's Huddle, you are encouraged to share resources, printed or online, that have proven valuable in living with a Glycoprotein Storage Disease.
Books and Publications
Post the names of books or publications that you think valuable in raising a child or caring for an adult with a Glycoprotein Storage Disease. The subjects of these resources can be medical, scientific, legal or about issues pertaining to special education or disabilities. Remember to give author, publisher's name and availability if known.
20 7 12-22-06  04:16 pm Terri Klein
Carepages
Our Penguin families show great love an support when one of our special children is in hospital. For those wonderful carepages set up for these children, post your link here so our penguin families stay up to date
14 12 05-01-10  03:50 pm Jenny Noble
Equipment to donate
From time to time families with special children have equipment that is no longer required. This link lists items that families wish to donate to others.
1 2 07-27-09  12:09 pm Jenny Noble
ISMRD Pathways magazine
Our latest magazines will be posted here. You are able to download them and send off to family and friends.
7 5 04-29-11  02:15 pm Jenny Noble

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