We explore and understand the challenges rare disease patients and their families face when looking to connect with a genetic expert.
How to find a genetic counselor – what to consider
Type of Genetic Counselor & Specialty
Finding the right genetic counselor means understanding the type of counselor that is the most appropriate for the person requesting counseling services. There are different types of genetic counseling based on the type of rare disease involved, the intent behind the genetic testing, the type of genetic testing, and the age of the rare disease patient affected.
Finding the right type of genetic counselor is important. An accurate diagnosis of a rare disease requires utmost accuracy and targeted care at every step of the analysis, testing, and diagnosis process. The more specialized a genetic counselor is, the more targeted the eventual diagnosis. This is crucially important in what is a very complex field of diagnosis. Finding the right counselor depends on understanding the roles of a genetic counselor.
Prenatal Genetic Counselor
If you are a parent-to-be trying to understand the options for prenatal genetic testing or a parent-to-be for whom genetic testing has identified that your unborn child might be at an increased risk of developing a rare disease then a prenatal genetic counselor is the right type of counselor for you.
Pediatric Genetic Counselor
If you are a parent or caregiver trying to understand and navigate the genetic counseling process for a child facing a potential rare disease diagnosis, then finding a pediatric genetic counselor can help you find the right support and information.
General Genetic Counselor
These are also very highly specialized experts in their field and are an invaluable resource for families and individuals facing a rare disease diagnosis.
Trust and expertise
For parents and individuals new to the arena of genetic testing and analysis, finding a trusted genetic counselor can be a confusing and long process. They must be able to connect to a network of trusted professionals who can provide the necessary support and help. While personal recommendations are of course important, there is also the need for professional recommendations and referrals that can help patients access the right care.
How to find a genetic counselor – the limitations
Accessibility
Accessibility to genetic counseling is a major limitation for many individuals. The main issues around accessibility include location and availability.
For many patients finding a genetic counselor close to home is a challenge. The further they are located from a major urban center, the harder it can be to find genetic counselors, let alone specialist ones. This in turn means many patients are forced to travel long distances to access the counseling services they need. This creates tremendous pressure, not only on their schedules but also impacts on the ease with which they can access such vital services and care.
The availability of genetic counselors is a limitation for many when it comes to accessing important genetic counseling services. Increased access to different genetic testing options, and greater awareness about rare diseases, means increased demand for genetic counselors and their services as well. This then leads to increased pressure for appointments, and for many families and patients, a long wait to see a genetic counselor.
How to find a genetic counselor virtually
Online genetic counseling options are revolutionizing the entire field of genetic counseling for patients and counselors alike, in terms of accessibility and improving care. Being able to access genetic counselors virtually is transforming the quality of care for patients, and removing many of the current obstacles to genetic counseling and genetic counselors, for many.
How to find a genetic counselor online – the benefits
Access to a wider network of genetic counselors
When it comes to online genetic counseling, rare disease patients are not limited to only those in their local area, or within a reasonable traveling distance. Instead, they can connect with a global network of genetic counselors. This means greater accessibility to a wider network of specialists. It means patients are better able to connect with the specific type of genetic counselor they need to manage their specific rare disease diagnosis or risk.
Trusted counselors
When rare disease patients and their families decide to opt for genetic counseling, such as the services currently offered by FDNA, they can connect with a network of trusted, experienced, and professional genetic counselors each of whom is an expert in their field.
Counseling from home
One of the main benefits of online genetic counseling is the fact that it can be accessed from anywhere. Anywhere with an internet connection, and a device with video. This eliminates long journey times and allows patients to access crucial care and support from the comfort of their own homes. This is a major benefit, especially for those for whom in-person counseling can appear daunting and too clinical. Online genetic counseling gives patients greater choice over how and where they access the care and services they need, this choice is essential in improving care outcomes for everyone involved.
Finding a genetic counselor can be challenging, whether online or offline. To support parents, FDNA offers practical solutions. Our Child Development Checker App lets you assess your child’s developmental concerns and potential genetic conditions from home. Additionally, the “Connect to an Expert” feature allows you to consult with specialized genetic counselors to discuss results and next steps. These tools provide accessible guidance, helping you make informed decisions for your child’s health and development.
