ALS Frontiers: Accelerating Diagnosis and Access in Rare Disease

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Chapters

1Chapter 5: Evolving Paradigm of ALS Care 2 3 4 5

Clinical Perspective Presented By:

Terry Heiman-Patterson, MD

Professor of Neurology

Lewis Katz School of Medicine at Temple University

Director, Temple MDA/ALS Center of Hope

Program Objectives:

Clinical Perspective Presented By:

Terry Heiman-Patterson, MD

Professor of Neurology

Lewis Katz School of Medicine at Temple University

Director, Temple MDA/ALS Center of Hope

Program Objectives:

Explore the evolving care paradigm in Rare Diseases, particularly in the context of Amyotrophic Lateral Sclerosis (ALS)

Discuss strategies to improve early diagnosis of ALS, and evolving care approaches for clinically asymptomatic individuals with increased genetic risk for ALS

Highlight the role of genetic counselors in implementing ALS genetic testing guidelines and empowering informed decision-making

Explore the evolving care paradigm in Rare Diseases, particularly in the context of Amyotrophic Lateral Sclerosis (ALS)

Discuss strategies to improve early diagnosis of ALS, and evolving care approaches for clinically asymptomatic individuals with increased genetic risk for ALS

Highlight the role of genetic counselors in implementing ALS genetic testing guidelines and empowering informed decision-making

Additional Resources

This following list of additional resources are external to Biogen. Biogen does not control nor makes any representations or warranties regarding any of the content contained within these resources.

thinkALS Clinical Diagnostic Tool

Evidence‐based consensus guidelines for ALS genetic testing and counseling: Roggenbuck J, et al. Ann Clin Transl Neurol. 2023;10:2074-91. doi: 10.1002/acn3.51895

International Alliance of ALS/MND Associations:

National Society of Genetic Counselors: “Find a Genetic Counselor” Tool

Select Resources from ALS Patient Advocacy Groups:

ALS Association Genetic Counseling and Testing Information Sheet

ALS Association Genetic Counseling and Testing for ALS

Les Turner ALS Foundation My ALS Decision Tool^TM

End the Legacy Genetic Testing Information

Your ALS Guide Genetic counseling and testing for ALS

Resources for Working with US Military Veterans with ALS

Federal Code on Presumptive service connection for amyotrophic lateral sclerosis

Veterans Benefits Association Guidelines for Service Connection for Congenital, Developmental, or Hereditary Disorders: