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In 2020, 105 families + individuals from 61 different rare disease communities have received a total of over $78k to help with rent, utilities, food, medical bills and therapeutic equipment.

Join us in 2021!


Age 6, Living with CDKL5

I Stay Home for RARE

who do you stay home for?

We stay home in solidarity with those protecting the lives of children, family members, and friends living with rare diseases during the COVID-19 pandemic.

I Stay Home For Rare™ is a campaign and fund for those standing with us in this cause. Through this new platform, together we are raising awareness and funds to help people in this time of heightened need. 

Join us through social media, storytelling, fundraising, and resource sharing.

Advocacy  Resiliency 
Fundraising  +  Giving 

Solidarity   Connection

Support    Storytelling 


“Rescheduled appointments, no monthly visits, blood shortage, and closed clinics. My medical team has informed me that during the pandemic, the emergency room is the last place to treat a sickle cell crisis.”


— Age 30, living with sickle cell disease

Giving +

Your contributions
help to support families

direct + fast

Partners &

Lead Sponsors

Thank you to all our partner organizations and lead sponsors helping to make this possible.

Living in the Light Logo
Cure CMD Logo
Cure GM1 Foundation Logo
Uplifting Athletes Logo
Lipodystrophy United Logo
One Rare Logo
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Two Rar Mama Beas Cure CMD Podcast Logo
Family Connection, Inc. Resources - Research - Relationships Logo
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Project Ascend Logo
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