Centers Offering Care for People at Genetic Risk
Clinical centers that welcome people and families at genetic risk for ALS and FTD.
Some people at genetic risk for ALS or FTD want access to genetic counseling, clinical evaluation, or ongoing monitoring before receiving a diagnosis. ETL identifies clinical centers that have expressed a willingness to see people at genetic risk and discuss the services available to them.
Services, eligibility requirements, costs, insurance coverage, and research opportunities vary by center. Please contact each center directly for current information.
Participation in ETL’s program is intended to help community members identify welcoming centers that meet certain criteria our team has identified as important for our community.
End the Legacy At-Risk Care Centers Program
ETL developed this initiative to encourage knowledgeable and compassionate clinical services for people at genetic risk who wish to pursue them. Participating centers have expressed their willingness to welcome members of this community and provide information about available care or monitoring.
Program Document
Criteria For Recognition
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Centers will strive to provide culturally competent care for those at genetic risk of ALS and FTD - acknowledging both the risks associated with carrying a pathogenic gene and the likelihood of many years of functional health and possibility of incomplete penetrance.
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Centers will consider establishing, when practical, specific days or times of at risk care.
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Centers will stay up to date on the evolving best practices for at risk monitoring in ALS and FTD and will adhere to the practices outlined in the forthcoming At Risk Care Guidelines currently being developed by End the Legacy and leading clinicians.
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Centers will offer community resources to at-risk patients including information on research participation, educational resources, and community organizations all available at EndtheLegacy.org.
