Supporting the Rare Disease Community During COVID-19

March 20, 2020

Dear Rare Disease Community,

As things continue to change with the spread of the novel coronavirus and COVID-19 infection, I wanted to reach out and make sure you know that you are not alone.

Since our beginning, Global Genes has been here to help make sure that everyone in the rare disease community is able to connect with the resources and services they need. We know this is a stressful time for everyone and we are committed to doing what we can to help. Whether you are a patient, caregiver, advocate, stakeholder or supporter – the Global Genes family is here for you.

Our staff and volunteers have stopped travel and our headquarters are temporarily closed, but our now fully-remote team continues pushing forward on the work that we have been doing for more than a decade.

To our patients, caregivers and advocates and our patient advocacy foundations that serve with us  – if you have questions, need resources or just need a listening ear, please reach out. This is the time for family, friends and community support. We are all here for each other.  

To our supporters from industry, research and individuals, you are vital to us being able to continue our work during these unprecedented times. Thank you.

While the situation is fluid, here are the actions Global Genes is taking today:

  • Resources: We have created an aggregate list of resources to help everyone around the world who is in quarantine or practicing social distancing. This includes government resources, entertainment, opportunities for virtual social interaction and more. We encourage everyone to contribute. Please share your resources with us at [email protected].
  • Events: We have postponed some of our most immediate events already and are looking into the possibility of turning some into virtual experiences. Our goal remains to provide the highest-quality programing in the safest manner possible to our community. As we solidify plans around all of our events, we will keep you informed.
  • Advocacy: One way we can overcome fear of the unknown and create a sense of belonging is by sharing our stories with one another. Our community knows more than most about social distancing and self-quarantining and we can be leaders now to help others around the world to understand the importance and best practices of these activities. As advocates in this critical time, we can work together to make sure progress toward treatment and cures does not stall or stop and that we do not lose life-sustaining continuity of care for rare disease because of this crisis. If you would like to share your point of view or your advice with others both within and outside of the rare disease community, we want to give you that opportunity and voice. Please contact our editorial team at [email protected]. Or simply share your story on social media and tag us so that we can reshare it.

Our thoughts continue to be with all of you during this extraordinary time. The entire Global Genes family cares deeply for the health and well-being of the rare disease community. We encourage everyone to follow the advice of their providers and the implemented measures in your  local community. We will communicate with you regularly as the situation changes.

Always with hope,

Kimberly Haugstad

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