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Innovative Organizations

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

The Patient-Led Research Collaborative is a group of Long Covid patients who are also researchers. They were born out of the Body Politic Slack support group and did the first research on Long Covid in April 2020. They are all researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19. To visit the Patient-Led Research Collaborative website click the button below.

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Solve M.E., a non-profit that launched the Solve Long Covid Initiative, has served as a catalyst for critical research into post-infection diseases for decades. The global pandemic has given rise to the latest widespread post-infection disease, Long Covid. In response to this devastating health crisis, Solve M.E. has initiated important Long Covid efforts: such as successfully advocated on Capitol Hill for a $1.15 billion NIH grant for Long Covid research. Launched a national multi-media ad campaign to generate awareness. Co-founded the Long Covid Alliance. Developed the Long Covid Registry to facilitate research. Funded research grants to study Long Covid. To visit the Solve M.E. website click the button below.

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Kindred is a growing health network for anyone affected by COVID. It is a easy way for long COVID patients to Collaborate on COVID research with leading scientists. It was created to help people find trustworthy information and benefit from having access to their health data. Most notably the LISTEN study was created by the Hugo Health Kindred team. By collecting information about symptoms and medical history from the Kindred community LISTEN researchers hope to understand Long COVID symptoms, immune responses, and vaccine injury. To visit the Hugo Health Kindred website click the button below.

Consuli's mission is to help people take control and choose who gets access to and how your personal health information is used. Claim, control, and manage your health data, get paid, and make medicine better. New public policy makes it clear that individuals own their data, yet, up until now there has been no easy or convenient way to get or monetize your data! Consuli is changing all this and turning individual data into an annuity, real cash-paying asset for people. Consuli often collaborates with long COVID researchers to helps them to fill studies, including the La Jolla Institute Long COVID Study.  Consuli is also known for its Clubhouse panels about long COVID research featuring prominent long COVID advocates, doctors and researchers. To visit the Consuli website, click the button below. 

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Pandemic Patients a 501(c)(3) non-profit patient advocacy organization with one mission: To relieve the harm caused by COVID-19 and Post-COVID Conditions. Andrew Wylam is the President and co-founder of Pandemic Patients. As a lawyer with an extensive background in patient advocacy and government relations, Andrew guides the organization in its engagement with policymakers and the public to provide support and services to people affected by COVID-19. They are working to ensure that those affected by COVID-19 receive the support and services they need to live their best lives. Pandemic Patients also has easy to read long COVID data. To visit the Pandemic Patients website, click the button below.