Global Genes® has free online course-offerings at its ‘Rare University.’ A valuable, featured course is entitled ‘Genetics Concepts for Rare Disease Patients and Families.’ It is a completely self-paced online course – you decide when you start and when you finish. It contains the following sections:
• Genetics Concepts for Rare Disease: Eight lessons for learning about many concepts that directly relate to genetic conditions, from basic concepts such as what genes and chromosomes are, to more complex concepts such as epigenetics and multifactorial conditions.
• Family and Heredity: Six lessons for learning more about the inheritance patterns associated with genetic conditions, about genetics healthcare professionals, and information about resources to help you connect with others in the rare disease community.
• Genetic Testing: Seven lessons for learning about how genetic testing works, about different types of genetic tests that exist, and about different types of genetic testing providers.
• Scientific Advances in Genetics and Medicine: Six lessons for learning about advances in genetics and medicine, such as gene therapy, gene editing, and human reproductive treatment advances. You’ll also be able to learn about participation in medical research, such as enrolling in clinical trials.
After registering yourself at Rare University, you have unlimited access to course offerings for as long as you like – across any and all devices you use. Rare University and its course-offerings are generously sponsored by several corporations, including Illumina®, Horizon Therapeutics PLC, Avexis, Novartis and Sanofi Genzyme.
SEPTEMBER 18-20, 2019 IN SAN DIEGO, CALIFORNIA, USA
Global Genes® ‘RARE Patient Advocacy Summit‘ gives rare disease stakeholders the opportunity to connect and learn through educational sessions and networking opportunities. Attracting more than 800 attendees, it is the largest gathering of rare disease patients, advocates and thought leaders worldwide. This year’s summit convenes at Sheraton San Diego Hotel & Marina.
Online registration is available now. The final deadline for a discount on the registration cost is July 31, 2019. Exhibitors can book their booth space now. Contact Global Genes® for answers to your exhibiting questions.
Global Genes® RARE Patient Impact Grant Program is an exclusive funding opportunity for rare-disease patient support groups and RARE Foundation Alliance partner organizations. (The RARE Foundation Alliance is a coalition of over 300 rare disease organizations that exchange best practices and share lessons learned to achieve better outcomes for the entire rare disease community.)
The first step in the application process is the submission of a Letter of Intent. Your Letter of Intent will be evaluated based on same selection criteria as the full grant application:
1) Innovative 2) Impactful 3) Achievable 4) Tangible and 5) Scalable. The Letter of Intent Deadline is Friday, August 11, 2017 at 11:59 p.m. Pacific Time. The Full Application is due (from those having accepted Letters of Intent only) by Monday, September 18, 2017 at 11:59 p.m. Pacific Time. RARE Patient Impact Grant applicant presentations will occur during the week of December 4, 2017. A handy online contact form will facilitate your questions reaching the correct person at Global Genes®.
Global Genes® has a valuable web page listing financial resources for families who have members affected by a rare disease. It contains a vast number of suggestions, links and crucial guidance. Don’t miss it!