Los Angeles, C.A., October 30, 2017. Rare Genomics Institute (RG) was the grateful recipient of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. For this award, RG committed to create an online training course for patient advocates in the genetics space, particularly for those working in diagnostics and serving undiagnosed rare disease patients. In this project, RG has worked with Dr. Harsha Karur Rajasimha and his team from Organization for Rare Diseases India (ORDI) to produce eLearning materials on two Lysosomal Storage Diseases: Niemann-Pick and Tay-Sachs, as well as the translation of all material to Hindi. Below is a sneak peak:
“As a virtual nonprofit, we boast the ability to work with patients, clinicians and researchers across borders to get to the cause of these rare diseases. Translating our work is a small step to give patient advocacy organizations worldwide a tool to train their advocates, so that they are best equipped to meet the needs of our undiagnosed rare disease patients.” said Romina Ortiz, MHS, COO and VP of Patient Advocacy, who is leading this operation for Rare Genomics Institute.
As of this week “Rare Gene Superheroes” enters the testing phase with RGs own leading patient advocates. Elizabeth Lotsof, Annie Wang, Qiuyin Ren and Yara Gorashi have been patient advocates at RG for over 3 years and will test the course and provide feedback. The course will be finalized and shared across RG, ORDI, as well as any organization that wishes to access the course online. The course will be free, and will be disseminated via RG’s social media channels and homepage. For anyone interested in receiving a link to the course as soon as it is ready, please fill out this short form. For more information on the Rare Gene Superheroes course, please contact firstname.lastname@example.org.
Sanofi is a global healthcare leader in the discovery, development and distribution of therapies for patients suffering from debilitating diseases often difficult to diagnose and treat. Sanofi is composed of five global business units including: Diabetes and Cardiovascular, General Medicines and Emerging Markets, Sanofi Genzyme, Sanofi Pasteur and Merial. Sanofi Genzyme’s global PAL Awards program supports non-profit organizations that serve patients living with lysosomal storage disorders (LSDs), a group of rare, genetic disorders that can cause progressive and debilitating health problems.
About Rare Genomics Institute
RG is a 501(c)(3) non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, RG helps custom design personalized research projects for diseases so rare that no organization exists to help. By providing an expert network and an online crowdfunding mechanism, RG helps families source, design, and fund personalized research projects in diseases not otherwise studied. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable support for whatever type of research is necessary to get closer to rare disease therapeutics.
About Organization For Rare Diseases India
ORDI (http://ordindia.org/) is a non-profit organization with the aim to empower patients with rare diseases and their families in India with access to national and international resources to improve their quality of life. A lack of awareness about rare diseases even among doctors means that a diagnosis often takes many years. The cost of diagnosis and treatment can also be prohibitively expensive. In the absence of a national government policy surrounding rare diseases, there is no push for the development of orphan drugs, the very medicines that can provide relief for patients with rare diseases. ORDI serves as a national umbrella organization for patients with rare diseases and other stakeholders. Our team consists of experts in genetics, molecular diagnostics, drug development, bioinformatics, communications, information technology, patient advocacy, and public service.