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Interested in Attending “Our DNA Doesn’t Define Us: Strategy Sessions for Ending Genetic Discrimination”


I AM ALS is hosting a one-day event to bring together patients, caregivers, advocates, legislators, clinicians and researchers across various diseases to forge relationships, share best practices and begin identifying genetic non-discrimination policies that will help to create a world without genetic discrimination. Removing genetic discrimination from the landscape not only is the right thing to do, it will allow people to know their gene status without fear and take control of their medical journey. This will lead to more empowered people and contribute to the field through research participation. Without the fear of discrimination, more data will be available to researchers and more people may enter into clinical trials. 

If you are interested in learning more about or attending this conference, please fill out this form. If you are interested in submitting a proposal, please click here.

Possible topics include, but are not limited to:

  • Legislation and advocacy 
  • Insurance policies and healthcare
  • Impact of genetic discrimination among friends, family, romantic partners and work relationships
  • How genetic discrimination impacts research participation
  • Research and anonymizing patient data

When: 6/11/21

Where: Zoom

Who: I AM ALS and I AM ALS’ Familial ALS Community Team

Cost: Free 

 

About I AM ALSI AM ALS is a patient-centric movement revolutionizing how to end disease. We provide critical support and resources to patients, caregivers and loved ones. We empower advocates to raise awareness and lead the movement against ALS in driving the development of cures. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to rewrite the ALS story for Brian and the tens of thousands of other ALS patients. Learn more at iamals.org.

 

About I AM ALS’ Familial ALS Community Team:The Familial ALS Community Team’s mission is to raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their loved ones. The team’s goals are to: raise awareness of and create advocacy opportunities for those with familial ALS, develop resources on familial ALS and support policy development that addresses gene discrimination. Learn more here

 

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