The ThinkGenetic Foundation was founded in 2016 as a nonprofit entity with the stated mission of raising awareness of genetic conditions through the creation and distribution of practical educational information about diagnosis and living with genetic diseases to healthcare providers and patients. Our team is dedicated to increasing awareness about undiagnosed patients who may have a genetic condition and spread the word about available patient focused solutions designed to decrease the time to the diagnosis of a genetic conditions.
We have planned a combination of in-person, distance, and durable learning educations events and tools to include:
Genetic Testing is Not Rocket Science
A webinar-based program designed to help patients (and family members) seeking a diagnosis for their underlying health issues or considering genetic testing for a condition in their family understand how to be tested for a genetic condition. Key topics will include: who is the best candidate for genetic testing, what types of genetic testing are available, who can order genetic testing, things to think about before being tested, and what are the limitations of genetic testing. At the conclusion of the lecture, participants should feel more confident in talking to their healthcare provider about testing and understand resources available to help them better understand genetic testing. A short educational “whiteboard” video will be created as a durable part of this program.
Creating a Medical Home: It really is all about YOU
An in-person and webinar-based program designed to help patients (and family members) living with a genetic condition how to optimize their medical care and management by working with their healthcare providers to create a patient-centered medical home. We plan to partner with existing advocacy groups to offer this program at patient support and advocacy meetings. At the conclusion of the program, participants should feel more confident in talking to their healthcare provider about designing their own medical home to optimize their care and treatment as well as understanding resources available to help them better understand genetic testing.
What’s Up Doc?: How to Talk to Your Healthcare Professional
An in-person and webinar-based program designed to help patients (and family members) living with a genetic condition or seeking a genetic diagnosis talk to their healthcare providers about their symptoms and questions. We plan to partner with existing advocacy groups to offer this program at patient support and advocacy meetings. Target populations would begin with Fabry disease, Epidermolysis bullosa, and Pompe disease. At the conclusion of the program, participants should feel more confident in talking to their healthcare provider to optimize their care and treatment as well as understanding resources available to help them better understand genetic testing.
Take the ThinkGenetic Challenge
A program designed to raise awareness about specific genetic conditions such as Fabry disease, Epidermolysis bullosa, Pompe disease through “gamification” to increase familiarity of specific diseases and challenge them to think about these conditions in their patient population. Healthcare providers will be offered the chance to enroll on-line or in-person in weekly “challenges”. Participants in the program will be sent a mystery diagnosis case to “solve” or a featured trivia question through email. Program participants will have their genetic condition awareness raised and hopefully remind them to consider genetic conditions in their daily practice.