BPAN Warriors

BPAN Warriors is participating in partnership with the Castleman Disease Collaborative Network (CDCN) and the Chan Zuckerberg Initiative. The goal is 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.

· bit.ly/repurposingsurvey

Expected duration: 15-20 minutes
Deadline: November 9, 2021.
A Spanish version is available / Hay una versión en español para pacientes

If you have questions or would like to connect with our team, please email project lead Ania Korsunska directly at [email protected] or check out the website https://cdcn.org/roadmap.

Thank you so much for joining us in this effort to revolutionize drug repurposing!

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

Additional Information:
If you are a rare disease non profit organization representative AND also a patient or loved one, you may take these elements of the patient or loved one part of the survey but it is ALSO VERY IMPORTANT that either you or another person in your leadership team takes the non profit organization survey is completed representative part of the survey! We must have the organization data to match with the community data.
Note: If you have already taken the survey, you may need to use an incognito browser or clear your cookie cache to take it again, depending on your browser settings.
We also completely understand that sending disseminating the survey to your community is a large ask. and may interfere with your planned activities, and many communities may be over-surveyed already. As a reminder - if the participants consent, we will be able to share the aggregated, de-identified data back to you.
If you’re not able to disseminate the survey within your community, we would be very appreciative for someone in your leadership team to take the survey as a representative of your organization. We anticipate it would take ~20 minutes for a representative of your organization to complete the survey. You can start the survey and finish at a different time, and we can also offer an extension to the deadline if one is needed.
Due to the complexities with different countries and regulatory bodies we are focused on just U.S.-based organizations and US-based participants now, but we are hoping to expand the project to Europe and beyond in future iterations. There is a Spanish option for patients and loved ones!
Only officially registered U.S. non profit organizations are eligible for participation at this time (must have an EIN number).

ROADMAP Project There are ∼7000 rare diseases affecting approximately 30,000,000 individuals in the U.S.A. and 95% of these rare diseases do not have a single Food and Drug Administration-approved therapy. Since the incentives for new drug development for rare diseases are limited, drug repurposing provides a pro...

The newly launched C-Path Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), a multi stakeholder initiative in partnership with NORD and funded by FDA, is a resource intended to accelerate rare disease research. Approved investigators will have access to deidentified patient-level data.

With the newly announced collaboration with RARE-X and ongoing engagement with rare patient groups and patient-centered data collection platforms already immersed in the rare disease space, such as Ciitizen and AllStripes, RDCA-DAP and multiple rare community stake-holders are developing an ecosystem in which rare disease data are collected, shared and used to further research.

This innovative approach will pave new paths In all diseases in urgent need of new treatments.

Read full release here: https://lnkd.in/gJ7waSse



https://lnkd.in/eYg57ARP