Are you a rare leader of a nonprofit organization that wants to take the leap into driving research and patient registries? 
We want to help you! Since 1983, NORD has provided the rare disease community with support in addressing these capacity-building activities. NORD’s RareLaunchTM program was developed to help people “launch” various capacity-building initiatives, from creating a nonprofit that represents their patient community to administering research grants or even launching a natural history study to serve as a catalyst for academic research. Through the RareLaunchTM program, NORD is hosting nonprofit workshops for those new to nonprofits and those with nonprofit organizations who are new to research and registries. 
Fill out this 15-minute survey to let us know your specific challenges and needs to conduct work with patient registries. Your responses will inform us as we develop our RareLaunchTM workshops with the resources and programs you need! Our survey is open, but the drawing for prizes is closed. Thank you for sharing our feedback with NORD.

Question Title

* 1. Contact Information

Question Title

* 2. Are you involved as a leader, Board member or staff of a 501(c)(3) incorporated, tax-exempt nonprofit organization?

20% of survey complete.