WeHaveAFace understands the need to discuss sensitive subject matter and topics pertaining to Huntington's and Juvenile Huntington's disease. It is our responsibility to "push the envelope" by hosting shows with sensitive topics such as suicide, sexuality/sexual promiscuity, alcoholism, aggression, behaviors, and so much more. We must continue to openly talk about all aspects of this disease.
The decision to broaden our organization internationally has provided us with a brilliant multicultural insight into our HD/JHD patients, caregivers, and medical professionals in other regions.
WeHaveAVoice Radio is blessed to have the guidance and medical insights of Dr. Herwig Lange (George Huntington Institute, Münster Germany). Dr. Lange has joined us as our Medical Advisor and has made it a priority to help our international Huntington's community.
WeHaveAVoice Radio is now broadcast via iHeartRadio, with the potential reach of over 70 million registered users! It is time to broaden awareness of this disease - globally!
"WeHaveAVoice Radio" is owned and operated by WeHaveAFace.org
WeHaveAFace.org and our Senior Medical Advisor, Dr. Herwig Lange of the George Huntington Institute of Germany are pleased to offer a professional, secure, and robust, telemedicine platform to provide free services to our population. Patients and caregivers can now participate in a one-on-one session from the comfort of their homes. Using a computer, tablet, or cell phone, patients, and caregivers can talk to medical professionals for support, advice, and feedback on the following: treatment, behavior problems, and psychological issues in acute situations.
This free service should be requested when the patient's medical professional is not available. In crisis situations, always contact your medical professional directly or seek emergency services immediately.
Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. She received her Ph.D. in Human Genetics from Johns Hopkins School of Medicine and completed her postdoctoral training in Bioethics at Mayo Clinic. Dr. Finn has devoted a large part of her career to researching whether, when, and how to communicate about genetic conditions and health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best to communicate with kids. Dr. Finn is passionate about normalizing and embracing the uniqueness and diversity of the human condition, and helping parents, family members, teachers, and health providers navigate talking with kids about difficult topics.
WeHaveAFace wishes to thank our international Huntington's and Juvenile Huntington's disease community for their years of love, support, and trust. Throughout filming each of our documentaries, we were able to meet so many amazing patients, caregivers, and medical professionals. It was definitely an extraordinary experience. These films pushed the envelope as we tackled subject matter never discussed before. The mission of WeHaveAFace has always been to broaden global awareness of Huntington's and Juvenile Huntington's disease. We are pleased to announce that our award-winning films are now free to view as we celebrate a decade of advocacy.
In June 2017, WeHaveAFace.org began to construct a unique platform to provide education for our international Huntington's and Juvenile Huntington's patients and caregivers, as well as professionals who are unaware of what this disease is. Through in-person conversations, support group meetings, and online surveys, the feedback from our HD/JHD community brought us to create our HD3 training program. All of us at WeHaveAFace.org: USA, Canada, UK, and Germany, have decades of experience working for group homes, nursing homes, hospice, day-training facilities, and hospitals. We have first-hand experience working for individuals with diseases and disabilities.
WeHaveAFace.org has produced a robust, interactive, multimedia-based training. Through in-person conversations, support group meetings, and online surveys, the feedback from our HD/JHD community brought us to create our HD3 training program.
What is HD3?
A 3 Tiered Approach!
HD1- The Huntington's patient: newly diagnosed, and early-to-mid-stage.
HD3- Nurses, CNA's, social workers, group home and nursing home staff (unfamiliar with Huntington's and Juvenile Huntington's disease)
*The HD3 Training was piloted in the UK - Spring 2017!*
HD1 & HD2 - Certificate of Completion
HD3 - Accredited
Since the 2017 update of our WeHaveAFace International Mobile App., we have over 100,000 active users - globally! WeHaveAFace is the premier multimedia advocacy organization for Huntington's and Juvenile Huntington's Disease.
Education - Information - Resources!
WeHaveAFace Downloadable Documents!
HDSA - HD Trial Finder!
The Unity Project: connecting patients and families with HD/JHD organizations
PLOS - Downloadable Algorithms documents for your doctors!
Educational Partnering HD/JHD Organizations!
Online Support Groups
MyID! Medical Alerts!
Organizations 4 HD/JHD - *Contact us to be added to the mobile App!
HD Bloggers - *Are you a Blogger for HD/JHD? Contact us and we will add your Blog!
WeHaveAFace believes it is imperative that our Huntington's and Juvenile Huntington's patients and families receive as many resources as possible.
If you have an additional resource you wish for us to list, please email us directly through the app!
"WeHaveAFace" App is owned and operated by WeHaveAFace.org
Copyright - 2017 - Registered via Android and iOS markets.
The Technological Tool Kit!
Educating: Police - Fire Rescue - EMS - Public
Keeping our HD/JHD loved ones safe!
We are official partners of MyID! We have joined efforts to provide a low-cost Medical ID Alert Bracelet - from ENDEVR creator of these amazing safety alerts! As partners of ENDEVR, the international Huntington's community can receive this discount only through the links below. These bracelets will facilitate a rapid response from EMS, Police, Fire Rescue workers, and the general public, in the case of an emergency! Unlike other bracelets or alerts that come with inscribed information, these MyID! Medical Alerts come with an electronic profile that can be updated on the fly with current information! No need to change anything on the bracelet!
MyID Hive Medical ID Bracelet
100% of proceeds from purchases of these MyID! Alerts are held at ENDEVR as a credit, which will allow WeHaveAFace.org to provide these products to HD/JHD community members who are unable to purchase them.