Huntington’s Disease in Latin America
Families affected by Huntington’s disease (HD) in Latin America suffer HD in very difficult conditions. Many of them live in impoverished areas where medical care is absent and access to resources is very limited. The highest density of HD patients worldwide exists in several small ‘clusters’ throughout Latin America, and many live in extreme poverty. One single action that will benefit them is a concerted effort of local communities and institutions with support from national and international colleagues working to improve the lives of HD patients through scientific, medical and humanitarian approaches.
The Latin American HD Meeting (LAHD2018) aims to bring together HD patients and people at risk, caretakers, healthcare personnel, physicians, scientists, social organizations, academic and governmental institutions working to improve HD families’ quality of life in the Latin American region. In that broad sense, this is not a scientific meeting; it is an event with medical, scientific, social and humanitarian purposes.
The idea of the LAHD2018 was born out of recognition that more effective interactions between scientists, clinicians and the patients and their families is crucial for advancing and accelerating the translation of research from the bench to clinical practices and novel therapies. This is not only important for ensuring patient participation in clinical trials and public support of research, but also because such interactions are important for improving our understanding of the complexity of HD and could inform and inspire new/future research directions and priorities that are aligned with patient’s needs.
In addition to sharing your expertise and ideas on the latest medical and scientific advances, we are convinced that your participation will not only contribute to improving the daily life of the HD patients and their families, but also contribute to developing a patient-centered approach to advancing research and therapies for Huntington’s disease.
Why you should participate?
- Nobody knows Huntington’s disease better than the patients themselves
- Meet and Interact with HD patients and their families to and discover the human side of HD
- Get a firsthand experience about how your work can make a difference in the lives of HD patients and their families
- Contribute to increasing awareness about HD and contribute to making HD research more people/patient-centered
- Inspire and be inspired by the patients