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Featured Guides

Featured Guides

The Office of Rare Disease Research offers several guides to provide you with tips for finding information, services, and resources.

English Guides

How to Find a Disease Specialist

Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, the How to Find an Disease Specialist guide provides several ways to identify healthcare professionals and researchers who have experience with a particular condition.

Tips for the Undiagnosed

Trying to find an underlying diagnosis for many conditions can be a very long and frustrating experience. With more rare conditions, a diagnosis can often take many years. Although this process can be incredibly difficult, this guide may help you navigate the steps to obtaining a diagnosis.

FAQs About Chromosome Disorders | ReadSpeaker Listen

Provides general information about chromosomes, what they do, the different types of chromosome disorders, and how they occur. This guide also provides suggestions for how to connect with other patients, locate research studies, and find additional information.

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Spanish Guides

Consejos Para las Personas Afectadas con una Condición No Diagnosticada

Información que le puede ser de utilidad para tratar de obtener un diagnóstico definitivo de su condición incluyendo programas de investigación y ensayos clínicos, grupos de apoyo, ayuda financiera y donde encontrar información adicional.

Preguntas Más Frecuentes Sobre los Trastornos Cromosómicos

Información general sobre los cromosomas humanos incluyendo los diferentes tipos de trastornos cromosómicos, información sobre investigaciones y ensayos clínicos, grupos de apoyo para los afectados y sus familiares, como encontrar clínicas de genética y donde encontrar información adicional.

Como Encontrar un Especialista en su Enfermedad

Información sobre cómo encontrar profesionales con experiencia o centros de tratamiento para una condición específica, como localizar clínicas de genética o investigadores interesados en enfermedades específicas y como obtener información adicional.

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Locate healthcare providers and researchers who have knowledge of your condition.

Navigate the process of trying to obtain a diagnosis.