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The I Stay Home for Rare Solidarity Fund

I Stay Home for Rare was started in April 2020 to address the growing need for financial support for rare disease individuals and families struggling during the COVID-19 pandemic. The fund was initiated through a partnership between Living in the Light LLC and Cure CMD, a registered 501c(3) corporation. Last year, we sent over $78,000 in the form of small grants to 105 families and individuals living with rare diseases, representing over 60 orphan conditions.

As of August 2020, we had received over 400 applications for financial aid and temporarily closed new applications due to soaring demand and limited resources to meet that demand. We did however, still manage to fund two more rounds of qualified applicants in the fall and winter.

It is our hope and intention to raise more funds so that we can continue to give money to those who need it, including reopening our application process and providing a fresh round of grants in 2021. Stay tuned to our website for updates in the coming weeks and months about our progress and to see if our application page can reopen.

If you would like to donate to the fund, we appreciate all amounts. Please click the Giving+ tab on this or any page to make a tax-deductible donation.

Our Story


Living in the Light™ is a patient advocacy initiative whose mission is to empower families and individuals affected by rare disease to be seen and heard as they relay their stories and advocate for their needs. Utilizing the potency of fine art photography, compelling personal narratives, and engaging filmmaking, we strive to address the isolation families and individuals often feel, as well as educate the biotech and medical community about the realities of rare disease and the effect they have on families and daily lives.


Our passion is story. Since our founding in 2012, telling rare disease stories has been our sole focus. Because of our deep and long-held connections to the communities we serve, we are called during this time to act. 


Aligned with our decision to suspend all of our normal business activities and services requiring travel of any kind until national public health and state authorities declare it safe, we have started the I Stay Home For Rare campaign and fund in order to provide immediate assistance and support to those we care about and advocate for. In addition to mobilizing and running this campaign, we pledge an initial matching contribution of $10,800. In this time of collective vulnerability and heightened need, we believe that action is necessary and greatly appreciate all the support and guidance we have received so far in this shared effort. 

To learn more, visit our website:

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