Table 1. Description of Study Sample.

Sociodemographic Variable		Total N	Percentage
Gender	Female	215	72.9
	Male	80	27.1
Marital Status	Married	226	77.4
	Not married	66	22.6
Highest Level of Education	High School/GED	57	19.5
	Some College	66	22.6
	College Degree	102	34.9
	Post-Graduate	67	22.9
Race	Caucasian	277	94.2
	Not Caucasian	17	5.8
Ethnicity	Hispanic	8	2.8
	Not Hispanic	273	97.2
Annual Household Income	<$25,000	25	9.3
	$25,000-49,999	45	16.8
	$50,000-74,999	69	25.7
	$75,000-99,999	36	13.4
	>$100,000	93	34.7
Current Insurance Status	Insurance	267	91.4
	No Insurance	25	8.6
Country of Residence	U.S.	231	78.6
	Outside U.S.	63	21.4
Parental Status	Yes	227	76.7
	No	69	23.3
Child's HHT Status	Yes	29	12.8
	No/Unknown	198	87.2
Demographic Variable		Mean (SD)	Range
Age (years)		49.5 (±13.7)	18-82
Years since HHT Diagnosis		29.25 (±14.6)	0-69
Recruitment Source*		Total N (%)
HHT Foundation direct mailing		100 (31.7)
HHT Foundation email notification (E-blast)		82 (26.0)
HHT Foundation website		77 (24.4)
Family Member		33 (10.5)
Facebook “HHT Awareness” Group		17 (5.4)
HHT Clinic		4 (1.3)
Friend		2 (0.6)

^*Note: N=315; five participants did not report source of recruitment