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"The only thing that all of the people with APS Type 1 have in common is the will to survive" -- Pablo Ramírez

 
September 2010
 
 
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Friday May 21st - 3rd Year at the Berkleigh Country Club, Kutztown PA Noon Lunch, 1pm shotgun start!

Great Food, Great Company, Great Course = Outstanding Fundraiser for APS Type 1 Research! $20,000 raised in 2009 for a great cause!

Can't wait to see you all...we have a lot of great stuff planned. 33 foursomes in 2009 so get your team together...it will go fast!!!  Click here to download the registration form.

 


WELCOME! If you've found this site, either you or someone you know or love has been recently diagnosed with a rare disease called Autoimmune Polyglandular Syndrome Type 1 (APS Type 1) also known as (APECED) Autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy.

Our long term goal is to establish a non-profit organization for education and research.   But for now we have developed this web site to address three issues. 

  1. Help educate those that have been recently diagnosed, and their families, about this rare disease.
  2. Provide a centralized registry that will unify all those that have the disease so that we can find and communicate with one another.
  3. To raise money for research that hopefully will find a cure for those who suffer from this disease.

 

We hope you will take the time to visit our research section, ask a leading authority on this disease a question or two, and register with us so we can get you in contact with those that have gone before you in dealing with the challenges of APS Type 1/APECED.   The best advise you receive many times will come from those that have gone before you.

Please take time to visit the great links to the ailment sites like Hypoparathyroidism and Addison's Disease.   These diseases, as stand alone conditions, have great people supporting them through these sites and are a wealth of excellent information for those of us that have to manage multiple conditions.

Finally, if your financial means allows, please donate to our Restricted Grant that we have set up with NORD (National Organization of Rare Diseases).  By channeling funding into research we can ultimately find ways to take what researches already know about the AIRE gene and find a cure.