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Narcolepsy Network Signs On To a Letter to Prevent Rare Disease Patients from Deportation

September 11th, 2019

Narcolepsy Network, together with 105 other rare disease patient organizations, signed on to a letter this week asking the Administration to ensure that migrant individuals who participate in a clinical trial or who are receiving life-saving medical treatment have a legal pathway to reside in the US during the time such treatment is necessary. The House Committee on Oversight and Reform Hearing is holding a hearing today regarding our joint effort.

As part of the larger rare disease community, it’s our job to support each other – especially when it concerns to getting patients the medical treatment and access to trials that many so desperately need. Narcolepsy Network will continue to support these efforts as part of our partnership with the EveryLife Foundation.

Thank you to the National MPS Society, CAL Rare, and the EveryLife Foundation for putting this effort together.

— Keith Harper
President, Board of Directors
Narcolepsy Network, Inc.

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Date Created: September 11th, 2019
Last Updated: September 13th, 2019