Nowadays, it is even more critical to obtain accurate education, information, and resources for Huntington's and Juvenile Huntington's disease. WeHaveAFace believes that "reinventing the wheel" is counterproductive. Vital resources to benefit our patients and families are available, and most importantly, vetted.
Below are resources, information, and education from Dr. Herwig Lange of the George Huntington Institute (Germany) and the HDSA (Huntington's Disease Society of America).
Many of our outstanding medical professionals have been working on reports and mechanisms to identify CAG vs. Age of Onset for HD/JHD. Patients and families can review his presentation. Dr. Lange will also be our upcoming guest on WeHaveAFace TV, in which he will provide valuable information about his findings. Please visit the following link for useful and vetted information - Resources. Additional information on that page includes: Nutritional information, PLOS Treatment Algorithms.
It is crucial to understand CAG vs. Age of Onset and all of the contributing factors. Below is a video from the HDSA's 2020 Convention. Please review this very insightful video. We will also be updating this article with other vetted documentation regarding CAG vs. Age of Onset. Privacy is paramount, and WeHaveAFace urges our community to never share their personal information with anyone unless you are participating in a trial or study and/or with your personal medical professional.
Social Security disability process, health insurance, and legal resources.
As per the HDSA's website: Ask our disability expert, Allison Bartlett, general questions about the Social Security disability process, health insurance, and legal resources. You can also ask specific questions about your disability circumstances to get advice and resources. Allison Bartlett is HDSA’s Manager of Disability Program and is a disability attorney who specializes in guiding people with rare, chronic conditions, like Huntington’s disease, through the complex Social Security disability system. She comes to HDSA from the Caring Voice Coalition, where she represented patients with rare diseases, including HD, in their navigation of the legal processes associated with securing disability support. Allison has more than ten years of experience in the non-profit field, working on a variety of issues including human rights, domestic violence, social justice and environmental protections. She has travelled extensively and has spent time working in England and studying in Argentina and Switzerland. Allison holds a J.D. from the University of Cincinnati College of Law and a B.A. in International Affairs from James Madison University. She is admitted to the Virginia Bar."
It is imperative to obtain accurate information regarding the Social Security disability process, health insurance, and legal resources. Feel free to email Allison: firstname.lastname@example.org
Disability: When and what to disclose to your employer and what should I do when I can no longer work?
HDSA Locate Resources:
By clicking on the photo below, patients and caregivers can locate a plethora of information for support in many categories.
Clinical Care and Services:
The HDSA has a complete and comprehensive approach for our patients and caregivers: HDSA Centers of Excellence, Symptom Management, and Suicide Prevention. By clicking the photo below, you will be able to view many avenues of supports.
WeHaveAFace will continue to update this article with vetted and valuable education, information, and resources for the betterment of our community.