A survey of our CoRDS HOD patient registry has shown the following list of common symptoms for practitioners and the medical community to help recognize in patients, in the hopes of earlier diagnosis. Obviously, this is not an exhaustive list:
- Dizziness
- Numbness
- Spasticity
- Double Vision
- Nystagmus
- Tinnitus
- Myoclonus
- Poor Balance
- Slurred Speech
- Ataxia
- Fatigue
- Poor Coordination
- Difficulty Swallowing
Medical Team
Patient Advised
HODA, coupled with our patients and caregivers, has complied a list of practitioners that they have found to be helpful in their care.
Do you know HOD?
Are you a practitioner who is emphatically familiar with HOD, and would like to be included in our HOD Practitioner map? Let us know HERE. We would love to include you in this distinguished group.
Volunteer for the External Medical Advisory Board
Are you a degreed medical professional with an interest in guiding the care of the HOD community in light of the fact that there are so few studies on this rare diseases? Above all, are you willing to volunteer 1-3 hours per month to assist in guiding HODA with vetting the most recent medical information, or even volunteering to be a PI in upcoming research projects? Kindly submit an EMAB Interest Form and we will be in touch!
Volunteer for the External Scientific Advisory Board
Looking to make a scientific impact on the vast world of rare disease during your career? Presently, HODA is currently recruiting for a new External Scientific Advisory Board to help guide the future of research into this extremely underappreciated neurodegenerative disease. Specifically, our ideal candidate would be in a doctorate program or post doc for neuro science. If this sounds like you, please complete this ESAB Interest Form and we will be in touch with you soon. Let’s work together to make HOD History!!