Finding Your Starting Point
Newly Diagnosed
Finding out someone you love has HOD can turn life upside down, especially when even doctors may not have heard of it. You’re not alone. The largest known community of HOD patients and caregivers is on Facebook, where you can connect, ask questions, and find support from people who understand.
Caregiver Guidance
Join Our Ambassador Program
HODA’s Ambassador Program pairs you with an experienced HOD caregiver who can answer questions about tests, therapies, medical teams, life hacks, and more. Every case is unique, but having a guide can help you navigate early challenges with confidence.
Caregiver Guidance
Join Our Ambassador Program
HODA’s Ambassador Program pairs you with an experienced HOD caregiver who can answer questions about tests, therapies, medical teams, life hacks, and more. Every case is unique, but having a guide can help you navigate early challenges with confidence.
Helping Research Move Forward
Help Your Patient Join the HOD Patient Registry
One of the most impactful steps you can take is helping your patient join the HOD Patient Registry, hosted by Sanford CoRDS. Sign up online, request a paper copy, or complete it over the phone. Caregivers can register on behalf of patients if needed, and all data is anonymized for privacy. The registry serves as the HOD Natural History Study, an essential foundation for research and future care.
Caring for the Caregiver
Caregiver Support Group
“You can’t pour from an empty cup.” That’s why we host a virtual caregiver and family group once a month. Join Dyani, a fellow caregiver, in a safe space to share, laugh, or cry no matter how you’re feeling. Meetings are one hour via Zoom, and once you sign up, you’ll receive monthly links automatically.
Time to Relax and Connect
HOD Happy Hour
Every quarter, we host a virtual HOD Happy Hour for patients and caregivers. Bring your favorite hobby, drink, or creative project, and spend an hour chatting and having fun with the community. Watch the EVENTS tab and our social posts for upcoming dates.
