Genetische Beratung und genetische Tests syndromes, sind wichtige Dienste für Patienten mit seltenen Krankheiten.

Hindernisse beim Zugang zu diesen Diensten führen jedoch häufig dazu, dass den Patienten eine kritische Beratung und Betreuung vorenthalten wird. 

Was ist genetische beratung und testen?

Was ist Genetische Beratung?

Genetic counseling is an important service for individuals facing a rare disease diagnosis. Genetische Beratung is a must before anyone begins a genetic testing journey, and it provides key information, education, and support for patients and their families.

Gentest involves any number of different tests to identify specific gene mutations or chromosomal changes, that might make a person a carrier for a genetic syndrome, or someone who is at high risk for developing a syndrome. 

Genetische Beratung und Tests wurden zum größten Teil immer durch persönliche Termine und Besuche durchgeführt.

Genetische Beratung und Tests in meiner Nähe

Genetische Beratung und Testen in meiner Nähe: die Herausforderungen

Wenn es um die Suche nach genetischen und wohnortnahen Beratungsoptionen geht, können Sie auf eine der folgenden Herausforderungen stoßen:

There are no genetic counseling and testing services in your area. This is an issue specifically in rural, and remote areas, but even in smaller cities or urban centres, genetic counselors can be difficult to find.

There are no specialized genetic counseling and testing services in your area. Sometimes, depending on the rare disease diagnosis faced, you may need a specific type of genetic counseling and testing- perhaps for pediatric genetics, or genetics related to a cancer diagnosis, or a counselor who has experience with a specific rare disease. With just 12% of genetic counselors, in the US, specializing in pediatric genetics for example, these specialists can be hard to find at all, let alone close to you. 

Genetic counseling services in your area have long wait lists, and wait times for an appointment. This is a very real problem, as genetic testing options and awareness around rare diseases grows, placing pressure on crucial counseling services, and making them even more difficult to access.

Genetische Beratung und Tests in meiner Nähe: Was könnten diese Herausforderungen für Sie als möglichen Patienten mit seltenen Erkrankungen oder Elternteil eines potenziellen Patienten mit seltenen Erkrankungen bedeuten?

You will have to travel long distances to access genetic counseling and testing services. This can be time consuming, and expensive, and involve juggling multiple family schedules to make it work. This creates a large amount of stress for everyone involved. 

You may have a long wait to access genetic counseling and testing services. This wait can be very frustrating, especially if you are also having to manage the symptoms of a rare disease, without a confirmed diagnosis. Unfortunately long diagnostic times are still much too common when it comes to receiving a genetic diagnosis, and this can have a very detrimental impact on the lives of those with a possible rare disease, and their families too.

You may be faced with the possibility of yet another misdiagnosis. When access to key genetic services is limited, the chances of receiving an accurate diagnosis rise exponentially. Even just a delayed diagnosis can have a tremendous impact on the daily lives of a rare disease individual and their caregivers. An accurate, fast diagnosis is crucial in improving the lives of those with a genetic syndrome, in order to ensure they receive the right support, and possible treatment options as quickly as possible. We know that early intervention is key to improving the lives of individuals affected by a rare disease, and delivering this means quick access to genetic counseling and testing services.

Genetische Beratung und testen in meiner Nähe: die Lösung

Wenn Sie Probleme beim Zugriff haben genetische beratung und Testdienste in Ihrer Nähe oder überhaupt, es könnte an der Zeit sein, online zu überlegen genetische beratung Optionen. 

In recent years, online genetic counseling services are becoming increasingly available for those struggling to access these services near them. 

Online genetic counseling what to expect

Benutzerfreundlichkeit: all you need is an internet connection, and a device with video capabilities. This means you can access online genetic counseling from your phone, tablet, or computer. 

Comfort: genetic counseling can be a difficult, albeit important, process for patients and their families. Being able to access this support from the comfort of your home, or other comfortable space, is very important and for many patients, it helps make the whole process less stressful. It also eliminates long journey times, and scheduling conflicts. 

Availability: many virtual genetic counseling services have a network of global counselors, allowing you to connect with a counselor from anywhere in the world, fast. This network of experienced experts means you can secure an appointment within hours, if necessary. It also means you can access specialist counselors, depending on the diagnosis you or your child may be facing. 

Für viele Eltern ist das Finden genetische beratung und das Testen von Diensten in ihrer Nähe, kann wie eine fast unmögliche Aufgabe erscheinen. Noch schwieriger erscheint es, wenn man lange Fahrten zu Terminen und lange Wartezeiten einkalkulieren muss, um überhaupt einen Termin zu bekommen. Dies erschwert nur den ohnehin schon sehr schwierigen Weg und Prozess für viele Familien. 

Online genetische beratung und Testdienste zielen darauf ab, den gesamten Prozess weniger anspruchsvoll zu gestalten, indem er schneller, leichter zugänglich und genauer wird. Dabei transformieren wir, wie wir suchen und finden genetische beratung und Prüfdienstleistungen. Hilfe und Unterstützung sind jetzt für alle verfügbar, die sie benötigen. 

 

 

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