Opportunity to tell the World Health Organization about your pandemic experience

Survey to collect your lived experience


** The WHO seeks information
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Genetic Alliance and our partner, LunaPBC, are involved in a very timely and accelerated project to collect data from all over the world for the World Health Organization. About 20,000 people helped t refine the critical categories for data capture, and now it is time to collect data on individuals' experiences living with the pandemic, whether you have COVID-19 or not.

We want to make sure that data from those of us who live with genetic conditions are in the WHO analysis. If you would like to be sure your members, patients, participants, and friends are counted there are two ways to invite them.

1) If you are a community or an organization of any kind, you can set up a "study" on our platform. This would have your logo on it, and you will receive access to the subset of data coming from your community. To see what this is like, check out this example (https://drive.google.com/file/d/1KUjiCgUFu_ASYvQVdpeWN-QhqSWOys31/view?usp=sharing) (using my disease org PXE International). If you would like to participate fill out this form (https://docs.google.com/forms/d/1h0-nkKY7BUoxywgNKPlQ1KtVdXdTikxKxREkCQnBK7w/edit?usp=sharing) to give us all the info you need to get your page customized. If you have questions, visit our description and FAQ here (http://geneticalliance.org/covid-survey-opportunity-communities) .

2) Simply have your members visit our general landing page (https://www.fighttoendcovid.com/) and take the surveys.

In both cases, survey respondents will be asked to take a number of steps that will ensure their privacy. This is critical to our system.

If you need help describing the importance of this endeavor to members, let us know.

I hope you are sheltering and sheltered well (http://fight-cov19.com/article/FastForward) .

Warm regards,

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Sharon F. Terry | President and CEO
Genetic Alliance | 4301 Connecticut Ave., NW | Suite 404 | Washington, DC 20008-2369
Phone: 202.966.5557 | Fax: 202.966.8553 | sterry@geneticalliance.org (mailto:sterry@geneticalliance.org) |

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