Fragile X syndrome (FXS) is the most common form of inherited cognitive impairment and a known genetic cause of autism. Initially, carriers of the FXS premutation were thought to only be at risk for having a child or grandchild with FXS. However, it has been found that premutation carriers are at risk for conditions not seen in carriers of the full mutation, namely fragile X-associated primary ovarian insufficiency (FXPOI) in females and fragile X-associated tremor/ataxia syndrome (FXTAS) predominantly in males. The aim of this study was to assess if premutation carriers are well informed about FXPOI and FXTAS and to ascertain which resources they find the most useful. We recruited premutation carriers through FXS related websites/listservs and provided a link to an online, anonymous survey, which consisted of questions regarding FXPOI and FXTAS knowledge, personal/family history and resource identification. A total of 43 respondents completed the survey. We found that most premutation carriers are aware of FXPOI and FXTAS. The majority of respondents learned of FXPOI and FXTAS from Internet websites and consider the Internet the most useful resource for gathering information. Most respondents believe the best time to inform a premutation carrier of FXPOI and FXTAS is at the time of diagnosis. Based on survey responses we therefore recommend 1) introducing the discussion of FXPOI and FXTAS at the time of premutation carrier diagnosis 2) referring the patient to reliable Internet resources and 3) establishing a genetic counseling relationship with the patient to continue a thorough discussion of the implications of carrying a premutation. In addition, one area in which genetic counselors can be of great benefit to the FX community is the education of other healthcare providers on FXS, FXPOI, FXTAS and the multigenerational presentation of these conditions.