HD Reach is committed to working with clinicians to bridge the gap between families and their healthcare providers. We can provide you with the family perspective and help you design HD appropriate care plans.
We highly recommend visiting the Huntington Study Group to take advantage of their resources designed for medical providers.
It’s important to note when working with people with HD, their support systems play a major role in their adherence to medical recommendations. It’s also important to give care partners opportunities to share their assessment and concerns. One symptom of HD is the lack of self-awareness. A patient may not be aware of their symptoms or the affect they are having on those around them. Research suggests that as the disease progresses past the prodromal and early phases that caregivers reports may be more reliable than the gene affected person.