TABLE 5

Capacity

Potential ApproachesStrengths and Challenges
Increase training opportunities for professionals through targeted education, publications in journals, and awareness of online resources.Strengths
 Universal training opportunities would provide at least some standard training to increase knowledge.
 Targeting multiple avenues of training is likely to capture the widest audience.
 This could allow for increases in the number of “frontline” professionals equipped to provide necessary support and guidance for families.
Challenges
 Developing curriculum, resources, and training protocols that could be used across training programs.
 For professionals who see few, if any, individuals with FXS, it is unlikely they will seek out or receive ongoing training updates regarding advances in the field.
Expand current genetic counseling training programs across the country.Strengths
 Increasing the number of genetic counselors could potentially expand available genetic counseling resources for individuals with an FXD.
Challenges
 Infrastructure/cost.
 It will likely be years before the effect is noticeable.
Increase education for the general public about genetics (beginning in elementary school).Strengths
 Early and ongoing awareness of genetics for the public could reduce the amount of education needed when an individual receives a diagnosis.
 Increased public awareness of genetics could lead to increased interest in professions related to genetics.
Challenges
 Difficult to implement and would require national dedication to increased genetics focus in education.
 Would not necessarily provide greater preparation for a family whose child is diagnosed with a genetic condition, such as FXS.
  • Content based on literature review and key informant interview responses.