Genetics Concepts for Rare Disease Patients & Families
Welcome to RareUniversity! This genetics course was designed especially for you!
Many of us within the RARE community find empowerment in educating ourselves about genetics and learning more about the condition that impacts ourselves or our loved ones. With advances in genetics like gene therapy and new genetic testing technologies many of us want to be able to keep up with the latest science and to be able to advocate effectively for ourselves and our loved ones.
In this course we cover genetics concepts that are relevant to understanding genetic conditions - from the very basic to some of the very complex. Even if you aren't sure exactly what genes and DNA are, this course is designed to provide you with the understanding and practical skills to start learning more about the condition that affects you!
There are four sections in this course:
- Genetics Concepts for Rare Disease: In this section, you'll be able to learn about many concepts that relate to genetic conditions from basic concepts like what genes and chromosomes are to more complex ones like epigenetics and multifactorial conditions.
- Family & Heredity: In this section you'll be able to learn 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 community.
- Genetic Testing: In this section, you'll be able to learn about how genetic testing works, about different types of tests that exists and about different types of testing providers.
- Scientific Advances: In this section, you’ll be able to learn about advances in genetics and medicine, such as gene therapy, gene editing and reproductive treatment advances. You'll also be able to learn about the participation in research such as clinical trials.
Each lesson in the course has a video lecture as well as a workbook with detailed explanations and activities. The workbook aims to help you develop practical skills and to put the concepts you learn into use.
You can start with whichever lesson interests you the most and learn at your own pace. The course was designed to allow you to choose your own learning journey.
We welcome you and wish you a great learning experience as you explore Genetics Concepts for Rare Disease.
Educational Purposes Only
The information provided in this and the accompanying lessons is intended for general educational purposes only. It is not intended to be medical advice and does not replace the information you receive from your health care team. If you have any questions regarding the information provided here or how it may be applicable to the disease or condition relevant to you, you should consult a member of your healthcare team.
This course has been developed as a resource for people who are either personally affected by a genetic condition or who may have loved ones or friends who are affected. Not all diseases have a genetic cause, and not all genetic conditions are yet known. Not all diseases or conditions have a genetic cause, and scientists have not yet discovered all of the genetic factors that may cause disease. Not all genetic conditions are yet known.
If you do not know if the condition relevant to you is a genetic condition, you should consult your healthcare team. You should always consult your healthcare team before making any changes to your treatment plan or decisions regarding your health, including deciding whether to undergo genetic testing.
Genetic Testing & Treatments
Any information about genetic testing options or treatment options presented in this course is for general educational purposes only. Any specific mention of a test or treatment is made only for illustrative purposes. This course does not suggest that any options are better than others or appropriate for you and your family. You should always consult your health care team to understand your options and decide what’s best for you and your family.
Genetics and genetic testing are rapidly evolving. This means that new technologies, new tests and new treatments may be available in the future and the information in this course may become outdated. It’s important to get the most up to date information from your health care team.
The information provided in this course is current as of August 2018.
Thank you you to our experience led focus group:
Lori Correia, Robin Deleon, Mike Deleon, Carolyn Dumond, Gay Grossman, Karen Leydiker, Molly Mcginniss and Holly Snyder
Thank You To Our Course Sponsor:
StartLesson 1: Orientation (4:16)
StartLesson 2: The Basics Of Genetics (14:09)
StartLesson 3: Genes- Up Close (20:02)
StartLesson 4: Introduction To Genetic Variants (14:41)
StartLesson 5: Genetic Variants- In Depth (25:04)
StartLesson 6: Genetic Variants- Introduction To Inheritance Patterns (13:17)
StartLesson 7: Mitochondrial Conditions & The Mitochondrial Genome (13:46)
StartLesson 8: Multifactorial Conditions (14:26)
StartLesson 9: Orientation (4:09)
StartLesson 10: Inheritance Patterns (25:15)
StartLesson 11: Reduced Penetrance & Variability Expressivity (15:13)
StartLesson 12: Genetics Health Care Professionals (15:25)
StartLesson 13: Important Conversations (9:56)
StartLesson 14: Coping & Well-Being (9:08)
StartLesson 15: Orientation (3:52)
StartLesson 16: What Is Genetic Testing (16:46)
StartLesson 17: Types Of Genetic Tests (19:36)
StartLesson 18: Reproductive Genetic Testing (19:37)
StartLesson 19: The Informed Consent Process (14:33)
StartLesson 20: Understanding Test Results (13:54)
StartLesson 21: Practical Considerations (10:02)