The Assistance Fund now helping Rett patients and families

Nonprofit pays out-of-pocket healthcare costs in over 80 diseases

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by Mary Chapman |

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The Assistance Fund (TAF), an independent patient assistance organization that helps patients and families with out-of-pocket healthcare costs, has expanded its program to include people with Rett syndrome and their families.

The fund seeks to help with expenses such as health insurance premiums and copays, therapy administration costs, prescribing physician copays, travel costs associated with treatment, genetic testing, and diagnostic tests. The fund’s Rett program is now accepting applications.

“People living with Rett syndrome face severe challenges that affect nearly every aspect of their lives,” Melissa Kennedy, CEO of the International Rett Syndrome Foundation, said in a press release. “I’m thankful to The Assistance Fund for opening this door to treatment for families and its longtime commitment to the rare disease community.”

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Rett is a rare, genetic neurodevelopmental disorder that is thought to occur in nearly 1 of every 10,000 female births. It causes cognitive, sensory, emotional, and motor disturbances, in addition to issues with breathing, digestion, and the heart. While not every patient will experience the same symptoms — which usually start in infancy — most will lose their ability to walk and communicate.

A recent real-world U.S. study found that, throughout their lives, Rett patients experience a substantial economic and clinical burden, largely due to the high prevalence of clinical symptoms. Rett-related costs were mainly driven by home/hospice care visits, therapeutic services, and outpatient and inpatient visits, according to the study.

“While a diagnosis of Rett syndrome can be devastating for families with young children, access to medication and therapy can mitigate symptoms and improve their quality of life,” said Gerald Lauria, the Assistance Fund’s senior vice president of business development and strategy.

“We are tremendously grateful to our generous donors for enabling us to open our new Rett Syndrome Financial Assistance Program and help so many families in need,” Lauria said.

Eligible patients must be U.S. citizens or permanent residents, have been diagnosed with Rett syndrome, and have been prescribed a federally approved therapy for the disorder. The program covers some 50 treatments that can be used by Rett patients.

We are tremendously grateful to our generous donors for enabling us to open our new Rett Syndrome Financial Assistance Program and help so many families in need.

Patients also must have prescription coverage for the approved treatment, and meet financial eligibility criteria based on household income and size. Note that others may apply on behalf of those with Rett. Patient applicants must be at least 18 years old.

For more information, visit the program’s website or call 855-509-2452. TAF offers assistance through more than 80 disease programs. Since its founding in 2009, TAF has assisted nearly 180,000 children and adults.