At Patient Worthy, we seek to partner with patient advocacy and other related organizations in order to collaborate and promote one another’s activities. Recently, we have begun a partnership with COMBINEDBrain, which works with a number of related groups (including other Patient Worthy partners) in order to accelerate the development of therapies for disorders and syndromes affecting cognitive and neurodevelopment.
COMBINED actually stands for Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders. It’s a nonprofit consortium led by patient advocacy groups and seeks to work with researchers, clinicians, and drug developers. While the group is primarily focused on cross-disorder projects, meaning initiatives that are meant to impact more than just one genetic disorder, members are also encouraged to undertake special projects related to their specific rare disease.
Consortium members usually have special projects requiring scientific expertise, expertise that usually comes from the Brain Trust. Through COMBINEDBrain, organizations can work with individual scientists or with the Brain Trust team. The consortium’s members can include any organization whose mission is focused on developing therapies for neurodevelopmental disorders and syndromes. Memberships are available to non-profit groups, individuals spearheading research, and drug companies. Learn more about membership here.
One of the services offered by COMBINEDBrain is its Rent-A-Scientist program. A lot of nonprofit organizations in the rare disease field, particularly groups that are small and relatively new, has trouble getting regular access to expert scientists that can help guide them on the path to research and drug development. The Brain Trust staff at COMBINEDBrain have been developing their expertise in a wide array of rare genetic neurodevelopmental disorders as more members join the consortium.
The Brain Trust consists of highly trained scientists with a wealth of research experience. Consortium members who need scientific advisory support are encouraged to send bid requests for a part-time, long-term scientific officer support. They can also send requests for short-term projects directly related to their individual disorders. To learn more about this, send an email to [email protected].
This is just a taste of the capabilities that COMBINEDBrain has to offer. To learn more about this Patient Worthy partner, click here.
