Alstrom Syndrome International ON THE MOVE!
Barack Obama, President of the United States, has announced a new initiative called the Precision Medicine Initiative. What he was really talking about was making medicine relevant and appropriate for specific individuals with specific clinical needs and specific treatments through the use of cutting edge medical technology. Because of its partnership with Genetic Alliance and […]
Rare Disease Day 2015
Please spread the word about Alstrom Syndrome. Be creative!
ASI’s Sandra Hubbard-LeBlanc receives the Katharine Pearson award ‘shining example’ of caregiver
Sandra Hubbard-LeBlanc, mother of Cheryl, member of Alström Syndrome International Board, and chair of ASI’s Canadian branch, received the Katharine Pearson Shining Example Award for promoting her daughter’s independence and high quality of life. She was also recognized for the work she does for caregivers in the local Yarmouth area, including co-facilitating caregiver support groups. “What started […]
Today is National White Cane Day!
Let’s take a moment to admire all of the adults and adolescents with Alstrom Syndrome who are experts in white cane and other adaptive skills! Let’s also take a moment to admire the little ones who are just learning white cane skills! Associazione Sindrome di Alström Italia (ASSAI) ASSAI Officially Organized! Learn more about ASsociazione Sindrome di […]
2016 – Eighth Alstrom Syndrome International Conference
ASI Conference – Plymouth Massachusetts May 13-16, 2016 ASI is already well into plans and planning for the 8th International Family Conference that will be held, once again, in Plymouth, Massachusetts May 13-16, 2016 at the Radisson Plymouth Harbor Hotel. The facility is undergoing some serious renovation, the Mayflower is back on station after her […]
ASsociazione Sindrome di Alstrom Italia (ASSAI)
ASsociazione Sindrome di Alström Italia (ASSAI) ASSAI Officially Organized! First meeting of ASSAI Learn more about ASsociazione Sindrome di Alström Italia
ASI Awarded PCORI (Patient-Centered Outcomes Research) Contract
Hello Everyone!It’s always nice to be able to send along really good news. Yesterday, the Genetic Alliance and ten rare disorder partners were awarded a large contract by PCORI (Patient-Centered-Outcomes-Research-Institute). Although we often measure progress by the drop, this is a whole bucket, and it’s making a very big splash too! We will be in […]
Associazione Alström Syndrome Italia – Third Family Meeting
Associazione Alstrom Syndrome Italia will hold its third family meeting October 5, 2013 at the Hotel Terme Millepini – Montegrotto Terme, Padova PROGRAM Convenzione Eolo eventi – 5 ottobre 2013 Millepini
2014 Master Golf Tournament Raffle!
Full details on the Alström Angels website: http://www.alstromangels.com/2014-masters-tickets.html
Alström Angels Golf Classic
Friday October 18, Lubboc Texas! For full information, visit the Alström Angels site! http://www.alstromangels.com/golf-classic.html
