In partnership with Global Genes, the E.WE Foundation is conducting a financial advocacy research survey to assess the financial burden associated with a Trisomy 18 diagnosis. Our goal is to explore individualized financial concepts to identify whether access to financial advocacy resources and education can contribute to lower out of pocket expenses for families impacted by Trisomy 18.

Why is this survey important?

A study conducted by the EveryLife Foundation for Rare Diseases concluded that the estimated economic cost of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. To generate the data for this study, EveryLife identified both direct medical costs, via an analysis of claims data, and indirect and non-medical costs, via a survey (The Rare Disease Impact Survey) of 1,399 members of the rare disease community. The study identifies an urgent need to fund research, enhance awareness, and improve access to diagnoses, care, and treatment of rare disease.

This is a funded project. Compensation for participation is available. Please direct all questions to our Project Management Team at projects@theewefoundation.org.

  • Expected duration: 10-15 minutes
  • Deadline: October 29, 2021
  • A Spanish version is available upon request.

The E.WE Foundation is participating in partnership with the Castleman Disease Collaborative Network (CDCN) and the Chan Zuckerberg Initiative to understand the state of drug repurposing in rare diseases and create a shared, free resource that will make it easier to pursue successful drug repurposing. If you’d like to join us in this important work, please click the link below to complete the survey as a patient, loved one of a patient, physician, or researcher. 

  • Expected duration: 15-20 minutes
  • Deadline: October 26, 2021
  • A Spanish version is available / Hay una versión en español para pacientes

If you have any further questions, please contact project lead Ania Korsunska at ania@castlemannetwork.org or check out our website https://cdcn.org/roadmap.

Additional Background: 95% of the ~7,000 rare diseases do not have a single FDA-approved therapy. Since incentives for new drug development for rare diseases are limited, drug repurposing provides a promising way to identify effective treatments for rare diseases faster and cheaper. There are many treatments out there which could be useful for many rare diseases, but to date, there has been no systematic effort to gather such a large and diverse data set of information and experiences, and no centralized resource exists that can help guide drug repurposing. With your support, we can help create it! You can read more about the project here: https://cdcn.org/roadmap