1st Annual Gala & Silent Auction in Good Will-Hinckley, ME

Our 1st Annual Gala & Silent Auction was Saturday, March 23rd in Good Will-Hinckley, ME. Thanks to everyone’s generosity we were able to raise over $14,000 for Alström Syndrome!  The day of the Gala it snowed about 22 inches. We still had a great turnout at our Gala even with the weather. We greatly appreciate […]

FDA’s Rare Disease Day

This year’s event on March 1, 2024 will explore ways to engage and collaborate with patients and advocates to support the development of medical products for rare diseases and address challenges with rare disease research. We have a packed agenda to empower patients with helpful information about clinical trials and engage local health care professionals […]

Giving Tuesday

Support Alström Syndrome International this Giving Tuesday! Let’s spread awareness and contribute to a brighter future for those affected by AS! Every donation, no matter how big or small helps those in need! #GivingTuesday #AlströmSyndrome #CharityImpact  

ASI Annual Fund Drive Letter

We want to express our deep gratitude for your continued support of Alstrom Syndrome International (ASI).  ASI Fund Drive Letter. Additionally you can scan the QR Code to make an online donation to ASI.  

10th Alstrom Syndrome International Family Conference, Scientific Symposium

It is with great joy after more than 3-years, with the COVID pandemic mostly behind us, that we all now join together in support of the Alström community for the 10th Alström Syndrome International Family Conference and Scientific Symposium! During the following 4-days you will have the opportunity to meet family members new to Alström […]

Alstrom Update – Please Donate

together please donate

The mission of ASI is: To provide support, information, and coordination world-wide to families and professionals to treat and cure Alström Syndrome. Update from Alstrom Syndrome International

FDA post EL-PFDD event survey

Hello everyone! The FDA post EL-PFDD event survey is ready to go. This survey should be completed by people who did not attend in person or virtually or those who did attend but did not fill out the survey during the meeting on September 22. The survey should be filled out by only those who […]

Updates on Information, Opportunities, and an Important Save the Date

Dear Family, I deliberately used the word “denizens” above because the most common definition is “inhabitant.” However, one also finds “one admitted to residence in a foreign country, “especially an alien admitted to rights of citizenship” and also “one that frequents a place.” All seem suitable for this post since we now have known patients […]

Giving Tuesday is here!

Giving Tuesday is here, and it’s a time we can all get behind ASI and help meet our fund-raising goals. Click on the image below to download to ASI today! Thank you everyone for all that you do!

2019 Fund Drive!

Dear Alström Family and Friends, For many years ASI has been “sailing to windward” against the wind and often against the cultural tides that decreed that rare diseases were “orphan diseases” and somehow did not merit the same interest or support garnered by grander national and global health issues. Despite the “knock down” we all […]

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