Finding Information about your Disease

If you or a loved one has been diagnosed with a rare disease, you may feel alone and overwhelmed at first. It’s important to know that these feelings are normal.

It may be helpful to give yourself some time to adjust to the news and reflect on your diagnosis before beginning the search for information about your rare disease.

Remember that you are not alone. Resources are available to help you and your family navigate this new and unfamiliar journey.

Social Media Resources

The use of social media can be another effective way to connect with or create a rare disease community. Facebook groups, blog posts, some websites, and a variety of other social media platforms can be useful in finding other individuals and families who share similar challenges and concerns.

The following are just a few social media sites that can help rare disease patients and families connect with an online community:

Genome Connect

This online tool allows people to share their genetic test results and health information with researchers and healthcare providers as well as to connect with other individuals who have a similar diagnosis or related symptoms. LEARN MORE

Global Genes

This site provides patient education and advocacy programs and helps people with rare diseases find a sense of community and support through connecting with one another. LEARN MORE

Inspire

Users can search the site by condition to find information and online communities. LEARN MORE

MyGene2

This consortium connects individuals and families with rare conditions to clinicians and researchers who are interested in sharing health and genetic information with each other. LEARN MORE

Rare Connect

This site features online communities for patients and families with rare medical conditions. The project is a collaboration between the European Rare Disease Organisation (EURORDIS) and the National Organization for Rare Disorders (NORD). LEARN MORE

National and State-Based Organizations

Once you’ve connected with a patient advocacy organization that can provide support and encouragement after your diagnosis, consider connecting with a national or state-based organization for your disease.

This is an important and helpful way to learn more about your disease from a reliable, trusted source. A general internet search can usually help to identify a national organization associated with a specific disease. Also, there are several websites that can be helpful in identifying national, disease-specific advocacy organizations.

For example, the NORD website provides a library of information for more than 1,200 rare diseases, including national and international advocacy and research organizations for each disease. Also, the National Institutes of Health (NIH) Genetic and Rare Disease Information Center (GARD) website contains an easy-to-use search tool that lists national and international advocacy organizations for specific diseases.

In Alabama, the grassroots organization, Alabama Rare, focuses on uniting Alabamians around the rare disease population within our state. It provides support for individuals and families as well as educates the broader community about rare diseases. Also, the organization collaborates with stakeholders in Alabama to create awareness of the rare disease population’s needs and advocate for necessary change to improve healthcare delivery. Alabama Rare is involved in key policy initiatives including:

– Medicaid expansion in Alabama
– Expanding the state Newborn Screening Panel (NSP) of genetic disorders-
– Comprehensive insurance coverage of medical nutrition
– Coverage of whole genome and whole exome sequencing genetic testing

Navigating Other Online Resources

Learning about your disease is an important way to empower yourself. With information, you can make informed decisions about your healthcare choices regarding treatment, providers, and participation in research. A vast amount of health information is available on the internet.

However, some of this information has not been vetted by trustworthy sources and therefore may not always be considered accurate and reliable. Also, information on the internet often highlights the most extreme cases and may give a skewed view of the severity of the condition. Accurate and reliable sources of health information may include national disease organizations, health organizations, healthcare practitioners, universities, or government agencies.

Resources are available to help you determine the most reliable sources of online healthcare information. MEDLINEplus, a service of the National Library of Medicine (NLM) and the National Institutes of Health (NIH), has posted a series of documents and links called Evaluating Health Information. This resource provides helpful guidance on how to find reliable information on the Web. It also includes tips for evaluating the quality and accuracy of internet sources and information. CLICK HERE to access this resource.

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