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Epilepsy Alliance America joins Epilepsy Groups Urging Congress to Maintain Orphan Drug Tax Credit

Epilepsy Alliance America joined 23 organizations representing people and families living with and affected by, the epilepsies urging Congress to maintain the Orphan Drug Tax Credit (ODTC). In late November, the organizations sent a letter asking Congress to remove a provision included in the Build Back Better legislation that would undermine the ODTC incentive by limiting its availability to only the first approved rare indication of a drug.

Advances in genetics have accelerated the discovery of many epilepsy-causing gene variants and complex chromosomal anomalies, leading to an increasing number of rare epilepsy diagnoses. While there has been progress and treatment approvals for a few of the rare, severe epilepsies, such as Dravet Syndrome and Lennox-Gastaut Syndrome, there is much more work to be done. Epilepsy Alliance America and the other organizations urge Congress to maintain the ODTC as it stands today so that people with rare epilepsy and their families can maintain hope that new orphan uses of drugs will continue to be pursued.

Read the letter here.