PWN4PWN has opened a narcolepsy registry in collaboration with CoRDS (Coordination of Rare Diseases at Sanford) to connect as many patients and researchers as possible to advance treatment for narcolepsy. The registry is free for patients to join and for researchers to access.
Participating in this registry and providing information related to a variety of topics, such as work, transport, and parenthood, will allow researchers to have easy access to useful data on individuals with narcolepsy in order to develop better studies more quickly as well as more easily find participants for these studies. PWN4PWN can also use this information to better understand narcolepsy, direct research initiatives, and inform patient support needs.
To learn more information about the registry and CoRDS, visit: https://www.pwn4pwn.org/narcolepsy-register/
PWN4PWN also has a private Facebook group where people can talk about experiences with narcolepsy and idiopathic hypersomnia and receive support. For more information on PWN4PWN, visit: https://www.pwn4pwn.org/
