Introduction
You Are Not Alone
Having a name for your symptoms can be both a relief and a shock, especially for rare disease patients. It’s normal to feel like your world has turned upside down. You are not alone, and we’ve gathered resources to help you and your loved ones on this journey.
Patient Story
Chris’s HOD Journey
“My doctor told me that this was not a death sentence. Indeed, it was not. It was a life sentence.”
— Chris Coates, President & Founding Member
Patient Story
Chris’s HOD Journey
“My doctor told me that this was not a death sentence. Indeed, it was not. It was a life sentence.”
— Chris Coates, President & Founding Member
Community Support
Connect With Others Who Understand
Support Groups
Join us on the 3rd Saturday of each month for patient-only virtual meetings in a safe, understanding, and supportive environment. Share your experiences, ask questions, and connect with others who truly understand the HOD journey.
HOD Ambassador Program
Be matched with an experienced patient or caregiver who can offer personal guidance, answer questions, and share practical tips for navigating life with HOD. This program is open to both patients and family members.
HOD Happy Hour
Meet others in the HOD community during our quarterly social hour. Bring your favorite activity, beverage, or hobby, and enjoy meaningful conversation in a warm, welcoming atmosphere that fosters genuine connection and shared experiences.
Support Groups
Join us on the 3rd Saturday of each month for patient-only virtual meetings in a safe, understanding, and supportive environment. Share your experiences, ask questions, and connect with others who truly understand the HOD journey.
HOD Ambassador Program
Meet others in the HOD community during our quarterly social hour. Bring your favorite activity, beverage, or hobby, and enjoy meaningful conversation in a warm, welcoming atmosphere that fosters genuine connection and shared experiences.
HOD Happy Hour
Meet others in the HOD community during our quarterly social hour. Bring your favorite activity, beverage, or hobby, and enjoy meaningful conversation in a warm, welcoming atmosphere that encourages genuine connection and shared experiences.
Stay connected and be a part of our community
Receive essential resources and insights in your inbox
Practical Help
Resources for Your Daily Life
Grocery Shopping Guide
Living with double vision or nystagmus can make simple errands more challenging. This easy-to-follow guide shares strategies, tools, and practical tips to help you navigate the grocery store with confidence, reduce stress, and make each trip easier from start to finish, no matter your situation.
HOD Blog & Insights
Our blog features patient stories, practical advice, and helpful tips for managing daily life with HOD. From navigating medical appointments to finding emotional support, each post offers knowledge, encouragement, and connection, giving you information and reminding you you’re not alone.
HOD Patient Registry
Take part in an important step toward advancing HOD research worldwide. The registry, hosted by Sanford CoRDS, is easy to join online, by mail, or over the phone. All data is securely de-identified for privacy, and your participation helps shape the future of care through the HOD Natural History Study.
Grocery Shopping Guide
Living with double vision or nystagmus can make simple errands more challenging. This easy-to-follow guide shares strategies, tools, and practical tips to help you navigate the grocery store with confidence, reduce stress, and make each trip easier from start to finish, no matter your situation.
HOD Blog & Insights
Our blog features patient stories, practical advice, and helpful tips for managing daily life with HOD. From navigating medical appointments to finding emotional support, each post offers knowledge, encouragement, and connection, giving you information and reminding you you’re not alone.
HOD Patient Registry
Take part in an important step toward advancing HOD research worldwide. The registry, hosted by Sanford CoRDS, is easy to join online, by mail, or over the phone. All data is securely de-identified for privacy, and your participation helps shape the future of care through the HOD Natural History Study.
Our Research Partners
Medical Connections
How to Find a Doctor Who Understands HOD
Finding a doctor who has heard of Hypertrophic Olivary Degeneration let alone treated it can be challenging. But with the right approach and resources, you can build a care team that understands your needs.
Step 1 — Start with Specialists
Seek out neurologists, neuro-ophthalmologists, or movement disorder specialists, as they are more likely to recognize HOD symptoms or connect you with someone who does.
Step 2 — Leverage Patient Networks
Reach out to other HOD patients through support groups or social media communities. Peer recommendations can save time and help you avoid trial and error.
Step 3 — Use Rare Disease Directories
Check national and international rare disease organizations for practitioner databases, such as the National Ataxia Foundation or NORD.
Step 4 — Ask for Referrals
When meeting with any healthcare provider, ask if they can refer you to a colleague experienced with rare neurological conditions.
Step 5 — Be Your Own Advocate
Bring educational materials to appointments, explain your diagnosis clearly, and be ready to share reputable resources. Many doctors are open to learning alongside you.