My Rett Ally app: Free new tool from IRSF aims to help caregivers

User-friendly app will store all medical info for care in 1 place

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by Steve Bryson, PhD |

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The International Rett Syndrome Foundation (IRSF) has launched the My Rett Ally app as a digital tool to help parents and caregivers of people with Rett syndrome, calling it “a valuable addition to the resource toolkit.”

Free to those who care for Rett patients in the U.S., the user-friendly app aims to simplify and streamline caregiving tasks and enhance care coordination, according to a press release from the nonprofit.

“We are pleased to offer the My Rett Ally web app as another valuable tool for parents in their caregiving journey for loved ones with Rett syndrome,” said Melissa Kennedy, CEO of the IRSF, adding, “We recognize the importance of providing support to caregivers and believe this resource will offer practical assistance by simplifying administrative tasks and improving care coordination.”

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Rett syndrome is a rare neurodevelopmental disorder primarily affecting girls. It’s marked by cognitive, motor, emotional, and sensory disturbances, as well as breathing, heart, and digestion problems.

The condition is not a degenerative disorder, however, meaning that individuals with Rett can live to middle age or beyond, requiring long-term care.

Given that need, the My Rett Ally app was designed to consolidate information and promote collaboration with medical professionals, according to the IRSF.

Features include a medical journal to store important medical information all in one place. A customizable daily tracker allows caregivers to log Rett-related characteristics, including seizures, medications, nutrition, mood, and sleep. Key documents concerning patient treatment also can be stored, and IRSF preloaded resources can be viewed.

While the information added to My Rett Ally is private by default, the app allows caregivers to safely share access to the medical journal and daily tracker, with the option to choose what sections to share and for how long. The app also allows users to download information in a PDF format for sharing.

With the My Rett Ally app, caregivers can send care information to medical professionals and other care providers through text or e-mail.

My Rett Ally simplifies the day-to-day elements of caregiving allowing caregivers to focus more on quality time with their loved ones.

The app was developed in partnership with Mejo, a technology company specializing in creating tools and resources to support parents and caregivers of individuals with rare diseases.

“We are pleased to collaborate with IRSF to deliver the My Rett Ally web app tailored specifically to the Rett syndrome community,” said Bret Koncak and Ryan Sheedy, Mejo’s co-founders and parents of children with a rare disease.

“We commend IRSF for recognizing the importance of supporting caregivers and the positive impact it has on individuals with Rett syndrome,” they said, adding, “My Rett Ally simplifies the day-to-day elements of caregiving allowing caregivers to focus more on quality time with their loved ones.”