Educational Resources
Our E-Course
Rare Gene Superheroes E-Learning Course
Rare Gene Superheroes is an e-learning educational resource consisting of four, 20-minute interactive, online modules aimed to train patient advocates with the goal of strengthening and optimizing rare disease patient advocacy pre-sequencing and post-sequencing support functions. In partnership with Dr. Harsha Karur Rajasimha and his team from Organization for Rare Diseases India (ORDI), materials on two Lysosomal Storage Diseases: Niemann-Pick and Tay-Sachs were produced, as well as the translation of all material to Hindi.
The work of a patient advocate at RG is highly specialized and requires specific knowledge and expertise in genetics, sequencing, special focus on rare disease, professional patient interaction, and privacy. Providing quality, uniform training to patient advocates, is critical to successful patient outcomes.
Our e-books are free and are delivered immediately upon download. Simply input your email and a download link will appear.
Our E-Book Collection
Applying Next Generation Sequencing and Transgenic Models to Rare Disease Research
By Arvin M. Gouw, Amritha Jaishankar, and George A. Brooks
This book explores the challenges and advancements in rare disease research, highlighting the need for better understanding and treatment options for the over 30 million people affected in the U.S. alone. It focuses on the role of genomic approaches, such as CRISPR and next-generation sequencing, in uncovering the causes of these complex conditions. By bringing together researchers, healthcare providers, and organizations, this collection aims to foster collaboration and innovation in the field.
Rare Diseases, Diagnosis, Therapies, and Hope
By Ana Sanfilippo and Jimmy Lin MD PhD MHS This book offers an insightful exploration of how genome sequencing and advanced techniques are transforming the landscape of rare diseases, featuring personal stories from families affected by these conditions. Weaving together expert insights and heartfelt narratives, this resource aims to educate and inspire hope for those living with rare diseases and emphasizes the importance of raising global awareness.
Diagnosing Rare Diseases
By Ana Sanfilippo and Jimmy Lin MD PhD MHS This book includes almost everything in the book Rare Diseases: Diagnosis, Therapies and, Hope plus 40 pages of additional information on how the Rare Genomics Institute (RGI) helps patients connect with top scientists, receive crowdfunding donations, and pursue genomic sequencing.