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What We Do

Overview

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 professionals, referrals to local services, care management, family support, education, and anonymous genetic testing. 

What We Do 

  • Troubleshooting issues and researching options to help you with the challenges related to life with HD 
  • Researching and applying to long-term care living facilities 
  • Connecting you to resources offered by community organizations, local and state governments, foundations, or other groups 
  • Helping you apply for long-term disability 
  • Discussing insurance plan options and other financial considerations 
  • Coping with challenges and building resiliency using Cognitive Behavioral Therapy 
  • Connecting you to others in the HD community through local Meet-Ups and online support groups.  
  • Anonymous Genetic Testing and Counseling
  • Training for care partners with individualized conversations and group workshops 

HD Workshops, Conferences and Webinars 

Learn about HD and get tips on the most common and difficult issues through workshops, conferences, and our Video Library. Using the most up-to-date information, experts in the fields of medicine, mental health, law and finance provide focused talks on upcoming treatments, managing troubling behaviors, insurance, genetic testing, and more.  

What We Don't Do 

While the HD Reach team can help you with many of life's challenges, there are some things we can’t do. For example:  

  • We do not provide medical 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 Professional 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.  

Connect With HD Reach Today 

HD Reach is a judgment-free zone. It is likely your question or concern 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.  

You can complete a confidential Pathway Profile to let us know how we can best meet your needs.  

What Is a Pathway Profile? A Pathway Profile allows you to tell us your areas of concern and how you like to stay informed. Your profile is not shared with anyone outside of HD Reach. 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. 

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