Huntington’s Disease (HD), like many rare diseases, is challenged by the low number of patients that any one healthcare professional sees.  Often the disease is managed by neurologists who also manage many other diseases.  Institutions that establish HD Clinics are often under-funded and lack the multi-disciplinary resources needed to care for the many manifestations of the patient’s disease.

Patients with HD live everywhere in the US, and their access to good HD care is largely dependent on what their local healthcare community is supported to provide.  This can range from large academic institutions seeing many patients and providing a spectrum of services to care for patients ‘under one roof’, to small physician practices that piece together a care plan supported by referral networks.

The HD-Net Community was formed in 2019 through funding by Genentech, managed by the Huntington Study Group (HSG) and supported by leaders of the HD community – CHDI, HDSA and others.  HD-Net is committed to elevating the level of HD care, and bridging the gaps that exist in the access to that care.  Our initial focus is in these 6 key areas:

Improving Care
– To establish and formalize evidence-based standards of HD care.

Deepening HD Knowledge
– To produce an efficient HD education system to promote a wider understanding of the disease, and support physicians in real time.

Providing Resources
– To develop centralized referral networks to identify HD care resources.

Emphasizing the Patient
– To enrich the collection and use of patient quality of life data to treat patients.

Harnessing Technology
– To explore how remote technologies (i.e. tele-psychiatry, tele-genetics, etc) can provide needed care support.

Supporting New Therapies
– To support adoption of new therapies in the treatment of HD.

JOIN THE NET

As a locally recognized leader in HD care, you have been identified as a person we believe we need on our team. Will you join our team? 

Clicking the button will redirect you to a web form from the Huntington Study Group where you can provide your name, email, phone number, and your zip code.