ALS Roundtable Program

Since 2019, the ALS Roundtable Program has served as a forum for candid, facilitated discussions that focus on finding ways to make ALS a livable disease until we can cure it.

All Roundtable meetings include individuals who reflect diverse points of view, including people living with ALS, caregivers, clinicians, academic investigators, industry colleagues and government officials. The group identifies challenges faced by people with ALS and their caregivers and then recommends actions that can significantly – and feasibly – impact future care and treatment of the disease.

The fall 2023 ALS Roundtable will focus on leveraging real world data to improve combination therapies and prevent complications.

ALS Roundtables Topics

Roundtable meetings address a clearly defined topic that is selected ahead of time by Association staff in collaboration with the Roundtable Advisory Panel. Topics of previous meetings have included:

Access to essential care, services and supports, as well as to new therapies
Clinical trial capacity
Decreasing ALS complications
Inclusion in ALS diagnosis, care and research
Reducing time to diagnosis

Meeting Summaries

Turning Discussion into Action

Following the Roundtable community discussions, the Association has convened a number of working groups to delve deeper into specific topics and develop initiatives that benefit the ALS community.

thinkALS tool to support earlier diagnosis

mouse Interactive patient journey web tool

DNA Genetic counseling and testing awareness and education campaign

capitol Patient Advocate Foundation partnership

wheelchair Advocacy for greater insurance coverage of ALS care

money New funding opportunities supporting clinical trial capacity and quality of care research

handshake Enhanced strategic engagement with the FDA

computer ALS Focus surveys

Learn more

Participating in the Roundtable Program makes me feel like I’m making a real contribution to the ALS community because I’ve seen so many ideas we’ve discussed make an impact on the daily experience of people living with ALS.”

ALS Roundtable Participant

Who to Contact

If you have questions about the Roundtable program, please reach out to Melody Schaeffer at [email protected]. Companies interested in getting involved as partners should contact [email protected].

Thank You to Our Roundtable Sponsors.

We are grateful for the support of our industry partners and for the valuable input and insight they bring to our Roundtable conversations.