Personalized medicine is revolutionizing patient care as we know it. Hear from our panelists as they share case studies of the progress enabled by personalized medicine. They will share the risks and opportunities new technologies have created in this space as well as the hope personalized medicine brings for the futu…
Personalized, or precision medicine is an emerging approach for disease treatment and prevention that considers individual variability in genes, environment and lifestyle for each person. This approach allows doctors and researchers to predict more accurately which treatment and prevention strategies for a disease wil…
Deciding when and if to have children can be complicated for people who have a rare disease or are carriers. Even knowing when and how to raise the issue with a romantic partner can be stressful. Learn about the role of genetic counselors in family planning, technologies such as in-vitro fertilization with preimplanta…
Gene therapies like CRISPR (clustered regularly interspaced short palindromic repeats), Adeno-associated virus (AAV) and others are all over the news, but how do you know if it is right for you? Hear from experts on recent developments in gene therapy technologies and understand what conditions and mutations are the b…
_**Please join us for our**_ 3rd Annual “RARE Patient Advocacy Summit_”_ held on **September 11-12, 2014** at the Hyatt Regency in Huntington Beach, California. _**Empowering Patient Advocates to Become Successful ****Activists**_ [Download Agenda][1][ (PDF) ][2][Download Speaker Bios][3] (PDF) Download PDF slides: [D…
# **Introduction **![][1] More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These…