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dskolaski

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1 reviews

Review for The National Organization For Rare Disorders, Danbury, CT, USA

Rating: 5 stars  

NORD does so much wonderful work for the rare disease community. My 7 yr old granddaughter has a rare terminal genetic disorder called Metachromatic Leukodystrophy (MLD). NORD has been instrumental in training and supporting me to become an effective patient advocate for my granddaughter and all the rare disease community in Texas. Through NORD and the Rare Action Network, we have successfully helped get key legislation passed in Texas, for example a Step Therapy Drug bill, Newborn Screening Expansion bills and Medicaid reform bills. I highly recommend becoming involved with this terrific organization!

Role:  Volunteer