International Rett Syndrome Foundation
Rating: 4.81 stars 21 reviews
Location: 4600 Devitt Drive Cincinnati OH 45246 USA
The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while improving the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
Programs: IRSF is the world’s leading private funder of basic, translational and clinical Rett syndrome research, funding over $28M in high-quality, peer-reviewed research grants and programs to date. Annually, IRSF hosts the world’s largest gathering of global Rett researchers and clinicians to establish research direction and priorities while exchanging ideas and the most recent information. IRSF is the most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and emotional family support, and stimulating research aimed at accelerating treatments and a cure for Rett syndrome and related disorders. IRSF has earned Charity Navigator’s most prestigious 4 star rating. To learn more about IRSF and Rett syndrome, visit www.rettsyndrome.org or call IRSF at 1-800-818-RETT (7388).
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1 person found this review helpful
As an employee of the IRSF, I am eager to share that we have a lot of big initiatives underway right now and I am excited to see what we uncover next! Our foundation is only as great as our supporters and our supporters are amazing. We value what they do for every facet of our foundation. We are lucky to have such a strong group of dedicated individuals who devote their time and energy to our cause! - Thank you! - Without you we would not have had the success we have been so fortunate to have!
I've personally experienced the results of this organization in...
Through attending the events, I've seen what a tight knit community we have. I am so appreciative of the support of our community and hope that we have been able to support the community as well!
If I had to make changes to this organization, I would...
Try to bring everyone even closer together. This is such a rare and not well known syndrome and I think it can make people feel so isolated. I want everyone to know that they can turn to the IRSF for support as well as the latest updates on what is happening in the research department. We need to lean on each other. Only our community understands what the members of the community experience on a daily basis and it is important that we are there to listen and support each other when need be.