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Covid Advocacy Groups

Sometime during your long covid journey, you may want to get involved in advocacy. However, there's a lot of advocacy groups and organizations that formed recently. Here is my list of some groups to get started with.


In 2020, 21 science, post-viral disease and patient advocacy organizations came together to spurn government investment for Long COVID research. This effort eventually created the Long COVID Alliance. Long Covid alliance has been amazing at the research, education and patient stories side of advocacy. It is the only advocacy group to be part of the press conference for longhauler legislation and well known for connecting advocates to their members of congress through an annual event called Advocacy Week. The most prominent core members in the alliance include Oved Amitay,  Emily Taylor and myself.  To learn more about Emily click here. To visit the Long Covid Alliance site, click the button below. 


Survivor Corps is the largest long covid Facebook group. It has nearly 200,000 members and is a public group and has been featured on multiple major news outlets such as ABC, CNN and MSNBC to name a few.  Survivor Corps, was created by Diana Zicklin Berrent, one of the earliest long covid advocates to become a media staple. Other notable advocates part of the Facebook goup includes, Nick Guthe, Liza Fisher, and the very beloved, recently departed Heidi Ferrer. Click here to learn more about Diana. Click here to learn about Heidi. To browse the website click the button below.

Body Politic is a fantastic advocacy resource for long haulers. Body Politic was founded as a queer feminist wellness collective in 2018. Two years later, founder Fiona Lowenstein became a long hauler so Body Politic created a Long Covid support group housed on Slack app that now has over 10,000 members. Aside from Fiona, one of their most prominent members in advocacy is Chimére Smith. one of MSNBC, CNN, PBS and more. They have been featured on MSNBC, CNN, PBS and more. Chimére Smith has even given a speech about long covid in front of congress. To learn more about Fiona Lowenstein, click here. To learn more about Chimére Smith click here. To visit the Body Politic website, click the button below. 


The Covid-19 Longhauler Advocacy Project was founded by Karyn Bishof, a Longhauler who has been ill since infection in March of 2020. Karyn is also a co-founder of Long Covid Alliance. She took up advocacy work for Longhaulers because she realized early on that Longhaulers were not being advocated for properly. Their mission is advocacy, education and support. They advocate for legislation to protect and help longhaulers. CL-10 LAP recently wrote an Open Letter to Biden concerning creating of safety net programs for those with long covid. For more information about the Facebook support group, click the button below.

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