The purpose of the I Stay Home For Rare Fund is to provide quick access to emergency monies needed by applicant families and individuals living with rare disease during the COVID-19 pandemic.


WHAT we are providing financial assistance for

  • Food, rent, utilities, transportation, and other essential recurring household bills.

  • Medical care, medication, treatments, medical equipment and other recurring bills related to maintaining health.

  • Childcare services related to maintaining work status and/or physical and mental health for parents and caregivers.

  • Necessary items specifically related to pandemic protection such as masks, soap, cleaners, hand sanitizer, etc.


WHO is eligible 


  • US-based families and individuals living with rare disease who are  in need of immediate financial help. 

  • We acknowledge that the diversity of the rare disease community intersects that of the larger world and strongly encourage those who experience ableism, difficulty with access to health insurance or healthcare facilities, secondary diagnoses, poverty, or discrimination based on their race, citizenship status, gender, and sexual preference to apply.


HOW funding is distributed


  • To the best of its ability, Living in the Light is providing aid in the range of $500 - $2,500 per selected recipient. Decisions about allocation of funds are made by a committee of external patient advocates. During the selection process, names and other identifying information remain anonymous to ensure a nondiscriminatory process. Living in the Light will notify recipients and dispense funds accordingly following each selection process.


Please fill out the following form which qualifies you as an applicant into a nondiscriminatory process involving the assessment of financial aid based on current need. Limit to one application per household. Aid currently available in amounts ranging from $500-$2,500.

The people and families featured in this site have all given their direct consent and permission to do so and are not the direct recipients of donated funds. They are however eligible to apply and to be selected through a nondiscriminatory process. 

The information provided in this site is for educational purposes only and is not intended to replace discussions with a healthcare provider. The information in this site does not constitute legal or medical advice of any kind.

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