Oregon State University is teaming up with the National Organization for Rare Disorders (NORD, rarediseases.org) in conducting a large-scale study about the “information and psychosocial support needs of people living with rare disorders.” Only those with a rare disorder or undiagnosed rare condition may participate in this 40-minute online survey. Caregivers are not eligible to participate at this time.
Within Brain Support Network, these three diagnoses are considered rare:
- PSP (progressive supranuclear palsy)
- MSA (multiple system atrophy)
- CBD (corticobasal degeneration)
Of course, LBD (Lewy body dementia) is NOT a rare disorder.
If you are interested in participating, check out:
oregonstate.qualtrics.com/jfe/form/SV_7VEgG8kwTizenAN?platform=hootsuite
At the bottom of that webpage, click on the NEXT button to view the consent form and proceed to the study.
Robin