This is the application for sponsorships from Rare Giving, a program of the EveryLife Foundation for Rare Diseases, to support tools and resources that will enable organizations to further their engagement in policy and advocacy activities.

All organizations selected to receive a 2026 Rare Giving Tools and Resources sponsorship will need to complete the following:
  • Mid-year check in: Mid-way through 2026, RDLA will host a check-in call with all Tools and Resources sponsorship awardees. During this call, awardees will share a status update on their tool/resource, as well successes and challenges they have experienced. This call will allow organizations the opportunity to learn from and connect with each other.
  • Update RDLA on status of tool/resource: Once your organization has completed the tool/resource you received a 2026 Rare Giving sponsorship for, you will be required to complete a survey to provide feedback on the Rare Giving program and share the final tool/resource creating with the Rare Giving sponsorship with RDLA.
  • Logo recognition: Your organization will be required to include the EveryLife Foundation for Rare Disease's logo on materials for the event you receive the Rare Giving sponsorship for.
Please note that your Rare Giving sponsorship application will be reviewed and scored based on the following criteria:
  • Inclusion of rare disease policy/advocacy education
  • Overall strength of tool/resource
  • Overall budget for tool/resource
  • Equitable/inclusive practices

Organizations are required to have a 501(c)3 designation to be eligible to apply. Organizations based in the United States and internationally are eligible to apply.

If you have any questions, please email Shannon von Felden, Vice President of Advocacy, at svonfelden@everylifefoundation.org.

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* 1. What is the name of your organization?

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* 2. Street address of organization

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* 3. City

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* 4. State

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* 5. Zip code

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* 6. Country

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* 7. If your organization's mailing address is different than the addresses listed above, please enter it here.

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* 8. Please indicate if your organization is based outside of the United States.

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* 9. What is your organization's tax ID number? Please note that your organization must be an official 501c(3) to be eligible for this sponsorship.

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* 10. Name and title of the point of contact for your organization

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* 11. Email for the point of contact for your organization

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* 12. Phone number for the point of contact for your organization (please indicate if mobile, work or personal number)

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* 13. What tool, resource, and/or activity are you applying for a Rare Giving sponsorship for? (ex: translation services, survey abilities, patient experience data collection efforts, ICD code nomination, or activities related to publications of advocacy initiatives, research such as an Institutional Review Board and publication fees, etc.). Patient registries are not eligible for funding under the tools and resources sponsorship.

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* 14. When will this tool, resources, and/or activity take place? (ex. date range)

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* 15. How will this tool, resource, and/or activity empower a rare disease patient community to engage in policy and/or advocacy?

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* 16. Please enter the organization website

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* 17. What is the total budget for the project?

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* 18. What amount of sponsorship are you applying for? Please note that the maximum Rare Giving sponsorship is $5,000 per organization.

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* 19. Are other organizations involved in this effort? If so, please list them.

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* 20. Which disease communities are involved in this effort?

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* 21. Does your organization serve limited-English proficiency (LEP) community? If so, what languages are used by your community members?

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* 22. How do you plan to ensure your project is inclusive of and accessible to as many people within your target audience as possible?

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* 23. How do you plan to ensure your project is equitable?

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* 24. How do you plan to share your newly developed resource or result of your work with the rare disease community?

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* 25. Have you received a Rare Giving Sponsorship in the past? If so, what year(s)?

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