*1.Your Name (First & Last)(Required.)

*2.Email address(Required.)

*3.In what country do you currently reside?(Required.)

United States

Other (please specify)

4.US residents, in what state or U.S. territory do you live?

AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of Columbia (DC)FloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Marianas IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaVirgin IslandsWashingtonWest VirginiaWisconsinWyoming

*5.Connection to Barth syndrome: (please choose one)(Required.)

Living with Barth syndrome

Parent or family member of an individual with Barth syndrome

Parent or family member of an individual who died with Barth syndrome

Community advocate, friend or volunteer

Healthcare provider

Other scientist or researcher

6.If you or your immediate family member has or had Barth syndrome, please provide comment to the question below, with specific examples if possible.

How would the availability of elamipretide, potentially the first-ever FDA-approved drug for Barth syndrome, impact (or have impacted) the life of you, your child, and/or your family member?