Los Angeles, C.A., February 18th, 2018. Rare Genomics Institute (RG) is happy to give some love and support to patient advocates worldwide during this holiday weekend.
Romina Ortiz, COO and VP of Patient Advocacy was the grateful recipient of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. For this award, RG created an online training course for patient advocates in the genetics space, particularly for those working in diagnostics and serving undiagnosed rare disease patients. This course will be used to train future Patient Advocate Associates at RG. 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 link to the eLearning course “Rare Gene Superheroes” has been sent to all those that submitted the early access form in late 2017 and has been shared across RG’s social media channels and homepage. Here is the link to the course located in the Patient Resources section of the RG website. For more information on the Rare Gene Superheroes course, please contact firstname.lastname@example.org
About Rare Genomics Institute
Rare Genomics Institute (RG) was founded in 2011 to fill the health care gap for undiagnosed rare disease patients and supporting research in rare diseases. RG helps rare disease patients find a diagnosis, treatment, and pathway to a cure by individualized access, coordination and execution of genetic sequencing and research services with RG and its affiliates. RG also supports rare disease advocacy by fostering an online community of rare disease patients, and supporting rare disease research through a yearly grant competition. We hope that these efforts slowly push science and care forward to meet the needs of the patients affected by rare diseases.
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 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.