HD Reach is working to improve the care and quality of life of those affected by Huntington’s disease. Founded as a nonprofit in 2009, we provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.
What Is Pathfinder?
HD Reach’s Pathfinder is a personalized, one-on-one service that provides people living with Huntington’s Disease (HD), their families, and their care teams with a partner in dealing with challenges related to life with HD.
HD Reach’s Pathfinder personalizes our service by helping identify areas of need and concerns for anyone with HD, their family, and their care teams. The HD Reach team strives to provide solution-oriented service to anyone impacted by HD, regardless of income or insurance status. We listen closely, explain thoroughly, and work side by side.
HD Reach remains open during our regular hours to help you with access to care, financial, legal, and other issues. Call us at 919-803-8128 Monday through Friday, 9 a.m. until 5 p.m. ET or email us at firstname.lastname@example.org. You can also start the process today by using our online self-service Pathfinder form.
2020 Holiday Hours
HD Reach will be closed during the following times so that care managers can spend time with their families:
January 1, January 20, February 17, April 10, May 25, July 3, Sept. 7, November 26 - 27, December 25, December 31
During these times, we encourage you to fill out our online Pathfinder form so that we can respond to you quickly when we return.
What We Do
Troubleshooting issues and researching options to help with the challenges related to life with HD
Researching and applying to long-term care living facilities
Connecting to resources offered by community organizations, local and state governments, foundations, or other groups
Helping to apply for long-term disability
Discussing insurance plan options and other financial considerations
Coping with challenges and building resiliency using Cognitive Behavioral Therapy
Connecting to a local support group and peer mentors to help you get the support you need
Deciding whether to test for HD and receiving the results in a confidential manner
Training for care treatment partners
What We Don't Do
While the HD Reach team is able to help you with many of life's challenges, there may be instances where we have to decline assistance. For example:
We do not provide clinical information, but we can help you find a care specialist to answer your questions.
We do not give out money. We can connect you with organizations that may be able to provide financial or other assistance and we can provide need-based scholarships for our fee-based programs.
We do not provide legal advice. We can refer you to resources that provide legal information or assistance.
We do not recommend specific for-profit businesses, products, or services.
How HD Reach Can Help Care Teams
Huntington’s disease requires care team members with expertise in a variety of specialized areas and an understanding of the complex physical, mental and emotional symptoms related to HD. A good care team is paramount in providing coordinated care to people living with HD. HD Reach can help by serving as a strategic ally for care teams by providing training or finding appropriate training resources, so team members can focus on their patients' care.
Some ways HD Reach can work with you:
Provide group training sessions to address common and specific needs of patients in your care
Help troubleshoot issues with patient consent
Participate in joint conference calls with you and your patients
Help your patient get ready for and make the most of their clinic visits
Conduct research to identify resources to assist patients with insurance, disability or other issues that may affect their care such as housing, food insecurity, transportation and living expenses
Help you access provider training and information
Training and Certification
HD Reach care managers are licensed LCSW and MSWs who are CME4HD trained. They are experienced in making referrals to community organizations' programs and vetting information about programs and services.
Each care manager participates in more than 64 hours of training annually.
Natural Disaster Assistance
If you or someone you know is affected by a natural disaster, such as a hurricane or flooding, HD Reach can help identify options for getting help with medications, housing, and other needs. Find out tips for preparing for an emergency situation.
Navigating HD Seminars and Workshops
HD Reach provides a series of recorded seminars and workshops tackling the issues common to people who are impacted by HD. Using the most up-to-date information, experts in the fields of medicine, mental health, law and finance provide focused talks to help users better understand upcoming treatments, manage troubling behaviors, insurance, genetic testing, and other topics related to life with HD. Start the series today.
Connect With HD Reach Today
HD Reach is a judgment-free zone. It is likely that your question or concern is something that has been faced before, and if not, we will face it together, because no one has to do it alone. To find out how HD Reach can help you, call us at 919-803-8128, Monday through Friday, 9 a.m. until 5 p.m. ET or email us at info @hdreach.org.
If you would like to request assistance to help you navigate complex issues related to life with HD, click on the button below.