12 events found.
Education
Town Hall: Friendships and ALS
VirtualOne of the most common comments we hear is how hard it is to maintain friendships once someone is diagnosed with ALS. Join us to hear examples of friends who are making the best of a bad situation, examples of how to support a friend with ALS, and how people with ALS can continue to support their support squad!
National ALS Registry: Learn How You Can Join the Fight Against ALS.
VirtualNational ALS Registry: Learn How You Can Join the Fight Against ALS.
Free
ALS & Relationships, Sex, and Intimacy
VirtualAbout the Program A person living with ALS may not feel comfortable addressing relationship, intimacy and sexual health changes that occur during their ALS journey with their healthcare providers. Although their ALS care team is always there to help, they may not feel fully equipped to assist them. The good news is that there are […]
Free
FDA’s Rare Disease Day 2023
VirtualWe are excited to announce FDA’s Rare Disease Day will be on Monday, February 27, 2023 and registration is open for this virtual event. Dr. Robert M. Califf, Commissioner of Food and Drugs, will provide opening remarks to kick off an impactful event for the rare disease community. This year’s theme is “Intersections with Rare Diseases – A patient […]
Free
Ask Me Anything ALS – Clinical Trials
VirtualWhile there are currently no cures for ALS, there are numerous clinical trials taking place right now across the country with a goal of finding safe and effective therapies. With the many opportunities available, finding the right fit and participating in a clinical trial can be overwhelming and confusing. You and your loved one may […]
Free
Clinical Trial Recruitment & Retention: A Path Forward
VirtualALS clinical trials must represent all people living with ALS including those from diverse genetic, racial/ethnic, socioeconomic, and geographical backgrounds.
In March 2022, I AM ALS hosted the inaugural I AM ALS Action Summit to engage stakeholders in the ALS community to improve the clinical trial experience for people living with ALS and their caregivers. Summit participants included people living with ALS, loved ones and caregivers, physicians, clinical research coordinators, advocacy organizations, biopharma allies, and key government stakeholders.
This webinar, which will take place on March 8th at 6pm ET, aims to inform the ALS community of the results from the Action Summit and will include an exchange of ideas around clinical trial recruitment and retention and ways in which you can get involved.