Newly Diagnosed
Someone that you care about has been diagnosed with HOD. Chances are, your doctor has never heard of this disease and doesn’t know have any advice for you. Do not despair! The largest collection of HOD patients and care givers (that we are aware of) is on Facebook. You can join the group here: https://www.facebook.com/groups/1690605697672046
Join Our Ambassador Program
HODA offers a unique program for the newly diagnosed patient called the Ambassador program. All you need to do is complete the form on the patients page and watch your email. A seasoned HOD care giver will reach out to you and talk you through questions you may have about what kinds of tests or therapies to ask for, what is ‘normal’, what kinds of doctors to have on your medical team, life hacks, and other HOD specific questions. We ask that you understand that each case is unique, and that not all patients will have the same experience. Ambassadors will share their experience with HOD, but your experience may vary.
Help Your Patient Join The HOD Patient Registry
Did you know that the simplest yet most impactful way that you can help make HOD history is to join our HOD Patient Registry? It’s true! Our registry is hosted by Sanford CoRDS. The good folks at CoRDS have made it easy to participate! You can do the entire registry online here. Not comfortable with that? You can register and have a paper copy of the registry mailed to you, and complete it at your own pace. All you have to do is mail it back to them and they will handle the data entry. Still not comfortable? There is also an option to have a representative call you and complete the registry over the phone with you. You (as the care giver) are able to complete the registry on behalf of the patient in the event that the patient is unable to complete the registry for themselves. Talk about accessible!
If you are worried about your personal data being shared with HODA, never fear! All data shared with us and our reasearch teams are deidentified. CoRDS works hard to keep you anonymized and to keep your data safe. Our registry works as the HOD Natural History Study, which is an important first step into basic research of the disease in all states of progression. Please complete your registry today!
Support
We know that care givers and other folks close to the patient can often put their own needs last and shirk their mental well being. There is wisdom in the old saying, “You can’t pour from an empty cup.” That is exactly why we have established the care giver and family group. Not to worry, it only meets virtually for one hour a month. All you need is a wifi connection, and you can Zoom in to the group. Our support group is hosted by a fellow care giver who can empathetically relate to exactly what you are experiencing in your new journey. There is no wrong way to feel! This is a safe space to laugh or to cry or to feel any and all things in between Make this the month that you allow yourself some of that ellusive ‘self-care’ that everyone keeps talking about. Reserve your spot HERE today! The cool part is, once you do, we will send you the link every month automatically. You can choose whether or not you are able to make the time to attend!
Join Us For Happy Hour!
Join us quarterly for HOD Happy Hour! This virtual hour should be used to meet up with others in the community (if you have a connection to HOD, you are welcome!) and do what makes you happy. If painting makes you happy, then you should paint and chat. If having a cocktail or a mocktail makes you happy, then you should sip and chat. If basket weaving makes you happy, then you should weave and chat. You get the idea. Who doesn’t have space in their schedule for an hour a quarter to socialize and do something that makes them happy for one hour? Watch our calendar on the EVENTS tab and our social posts for dates and times.