PURPOSE:

On behalf of our BPAN community, BPAN Warriors invites you to join the BPAN Research and Collaborative Exchange (RACE).  As a nonprofit organization, BPAN Warriors operates with a single, urgent goal — to speed a cure for BPAN. BPAN Warriors is the only US 501(c)(3) nonprofit organization that is solely focused on expediting scientific research that will advance therapeutics and accelerate a cure for BPAN. We are the first and only organization focused on this rare disorder with a growing community of an estimated 2,600-10,000 patients worldwide.

BPAN RACE is a forum for researchers and clinicians to work together in collaboration with BPAN Warriors and BPAN patient advocates and community members to share disease insights, provide a mechanism for data and bio-specimen sharing and enable ongoing communication among community stakeholders. 

Through BPAN RACE, members will have the opportunity to represent the broad interests of our community stakeholders, crowdsource research priorities, and better utilize limited resources, with the focus on translational research that can be taken from the laboratory bench to the patient’s bedside as quickly as possible.

Your choice to share information with BPAN Warriors – including personal, private information is strictly voluntary and is also deemed to be done with the knowledge that BPAN Warriors’ practices further its goal to speed a cure for BPAN.

TYPE OF DATA COLLECTED:

BPAN Warriors will collect several types of identifying information about you through this brief survey. This data includes personal information that you directly submit to us as part of your participation. 

PRIVACY AND CONSENT:

At no time will BPAN Warriors sell or rent your private information to others, however the collected information may be analyzed in aggregate to gain insight and understanding about our expanding global community and geographic concentrations, which may lead to new research and collaborative opportunities. Any data analyzed and reviewed in aggregate, may be shared with third parties, including the BPAN patient community and will not include any identifying information. This may serve as a valuable tool for both facilitating research and enabling research sponsors to quickly evaluate the potential for investment in our BPAN community. No identifying information will ever be shared without your consent.

NEXT STEPS:

The BPAN RACE is the first step in a global initiative that will serve to collect data on individuals with BPAN. Through a series of brief online surveys, a centralized bio-repository and online data sharing platform, our goal is to build the largest and most comprehensive global collection of information on BPAN to date.

This is your chance to actively participate alongside our BPAN Global Community in building knowledge for a brighter future for those with BPAN. Please help us with our mission, to expedite scientific research that will advance therapeutics and accelerate a cure for BPAN. 

The terms of collaboration, access to data and general governance policies will be further detailed in a follow-up email. In the meantime, we welcome your insights and questions. If you would like more information on BPAN Warriors, we encourage you to visit our website or reach out to sarah@bpanwarriors.org.
 
QUESTIONS:

If you have any questions about how your information will be used, please contact us at: info@bpanwarriors.org.
 
WE ESTIMATE THE SURVEY WILL TAKE LESS THAN 10 MINUTES TO COMPLETE:

Question Title

* 1. CONSENT AND AUTHORIZATION: I authorize that all information provided on this form, including any and all personal, may be shared with BPAN Warriors to facilitate the communications between BPAN Warriors, BPAN R.A.C.E. participants and the BPAN patient community with relevant information about their programs and services, opportunities for research participation and time-sensitive calls-to-action requiring BPAN community participation. This data will be securely retained indefinitely.

To learn more about BPAN Warriors' General Privacy Policies, please visit: https://www.bpanwarriors.org/privacy

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