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Support for Patients and Families

support  registry  clinical trials  disease registry  advocacy  support groups  Genetic Disorders  non-profit/community and advocacy organizations  rare diseases  Rare disorders  Genetic Disease  Patient Advocacy  family support 

Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups.

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How to Get Involved in Research

research  registry  clinical trials  clinical studies  disease registry  researchers  clinical specimens  Genetic Disorders  rare diseases  Rare disorders  Genetic Disease  biospecimen  biorepository 

Reports about clinical research study results are often in the news, but it can be difficult to find out about studies that are in progress. If you or a loved one has a rare condition, you may be interested in participating in a research study. This guide can help you find current research studies.

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Help with Travel Costs

cancer  children  travel  clinical trial  veterans  transportation  Genetic Disorders  rare diseases  Rare disorders  financial help  Genetic Disease  Financial Aid  lodging 

People who have a rare medical condition often need to travel to receive care at a special medical center or to take part in a research study. The following resources can help with travel and lodging costs. These organizations provide information about free or discounted land or air travel, specialized medical care during transport, and supportive lodging options.

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How to Find a Disease Specialist

genetics  clinical trials  healthcare providers  genetic counseling  healthcare professionals  researchers  rare diseases  Genetic Disease 

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 guidelines below include several ways to identify healthcare professionals who have experience with a particular condition.

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Tips for the Undiagnosed

diagnosis  genetics  clinical trials  Genetic Disorders  rare diseases  undiagnosed  Rare disorders  Genetic Disease 

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 can be incredibly difficult, the following information may help you navigate through the process of trying to obtain a diagnosis.

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Tips for Finding Financial Aid

health costs  health insurance  reduce medical costs  dental costs  Genetic Disorders  rare diseases  medical costs  Rare disorders  financial help  Genetic Disease  Financial Aid 

The cost of care for rare medical conditions can place a significant financial burden on families. The following resources may help you find the financial support you need.

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