Megan Meyer is a rare disease advocate for her daughter, Lillian, who has Congenital Muscular Dystrophy. Megan advocates so that other families don’t have to be so badly burdened by the financial hardships that many go through when impacted by rare disease. Megan hopes to see legislation passed that makes a difference for families to get to diagnosis faster and to accessing treatments faster. Megan was inspired to do more for rare disease advocacy after participating in Rare Disease Week in 2018. Her and a friend now host a podcast called Two Rare Mama Bears where they talk about all things CMD and rare disease advocacy.
Get involved in rare disease advocacy by joining NORD’s Rare Action Network at rareaction.org
