Rare Disease
On 2/28 I went with members of my patient community to Senator Dianne Feinstein's office to thank her for her previous support ( she's on the Appropriations Committee and share with her representative information about our disease myotonic dystrophy This weekend I attended a NORD event and learned more about the Orphan Drug Act and met some great patients and caregivers representing other rare diseases I'm feeling a new sense of empowerment #RareDisease #MyotonicMuscularDystrophy #PatientAdvocates #NORD #OrphanDrugAct
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