Rare Disease Day at NIH Logo
Registration for this year's Rare Disease Day at NIH is now open!
Rare Disease Day at NIH Logo
Registration for this year'sRare Disease Day at NIH is now open!
Rare Disease Day at NIH Logo
Registration for this year'sRare Disease Day at NIH is now open!
Questions about rare diseases?
1-888-205-2311
Questions about rare diseases?
1-888-205-2311

Discover Resources

Some of the biggest challenges the rare disease community faces are finding reliable resources and support. Whether you’re a patient or caregiver, GARD aims to help you find the information you may need to navigate life with a rare disease. This includes resources on financial support, tools to help you communicate with your provider, and more. If you’re unable to find a resource that meets your need(s), please contact a GARD Information Specialist.

Please note that GARD provides organizations and resources for informational purposes only. Their inclusion does not reflect an endorsement by GARD or the NIH. Contact an organization directly if you have questions about the information or resources it may provide. 

Discover Resources

Some of the biggest challenges the rare disease community faces are finding reliable resources and support. Whether you’re a patient or caregiver, GARD aims to help you find the information you may need to navigate life with a rare disease. This includes resources on financial support, tools to help you communicate with your provider, and more. If you’re unable to find a resource that meets your need(s), please contact a GARD Information Specialist.

Please note that GARD provides organizations and resources for informational purposes only. Their inclusion does not reflect an endorsement by GARD or the NIH. Contact an organization directly if you have questions about the information or resources it may provide. 
Read More

Patient Resources

The impacts of a rare disease diagnosis can be widespread, affecting finances, access to care, everyday responsibilities, and mental health. The following resources may help address some of the common challenges faced by individuals with a rare disease diagnosis.

How can you afford the care you need?

With or without insurance, the cost of care for rare medical conditions can place a significant financial strain on patients and families. These resources and programs may provide you financial relief.

Grants and Funding 
Various organizations can provide financial assistance for specific diseases. Use the following resources to see if your disease qualifies.
Insurance Coverage  Medical Equipment Cost Assistance Medication Cost Assistance 

Caregiver Resources

Caregivers are individuals who support a person living with a rare disease. Some of their responsibilities may involve assisting with daily activities, nursing, coordinating care and making difficult decisions. The following resources may assist caregivers as they navigate these responsibilities.
Caregivers are individuals who support a person living with a rare disease. Some of their responsibilities may involve assisting with daily activities, nursing, coordinating care and making difficult decisions. The following resources may assist caregivers as they navigate these responsibilities.Caregivers are individuals who support a person living with a rare disease. Some of their responsibilities may involve assisting with daily activities, nursing, coordinating care and making difficult decisions. The following resources may assist caregivers as they navigate these responsibilities.
How can you address your needs as a caregiver?

As a caregiver, it is important to also care for yourself. You may at times feel overwhelmed or alone, but the following resources may help you find ways to create time for yourself, manage your emotional health, and connect with others.
 

How can you care for others?

As a caregiver, it may be challenging to find the support and resources you need to provide proper care to others. The following resources provide information and tools on home health care support, optimizing your home for caregiving, and building a community of support.
 

Resources for Your Health Care Decisions

As you navigate life with a rare disease, you may face many difficult decisions regarding your health care. It is important to be as informed as possible when making these decisions to ensure you receive the care you need. The following resources may assist you in deciding what to do when searching for a diagnosis, communicating with your health care team, and understanding alternative forms of care.

What if you have an undiagnosed condition or are not yet diagnosed?

General Support Genetic Testing Funding for Undiagnosed Conditions GARD Contact Center
Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential. Patients, family members, and caregivers may contact GARD by phone or our contact form.

What if you have an undiagnosed condition or are not yet diagnosed?

General Support Genetic Testing Funding for Undiagnosed Conditions GARD Contact Center
Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential. Patients, family members, and caregivers may contact GARD by phone or our contact form.

Where can you find tips for communicating with your provider?

Open and honest communication with your team of health care providers is critical to the diagnosis, management, and treatment of a rare disease. Knowing which questions to ask, how to prepare for an appointment, and where to turn for support will help you effectively communicate with health care providers.

Appointment Preparation  Effective Communication Care Coordination

Are there alternative ways to manage your health?

In some cases, standard treatments may not seem enough when managing the symptoms of a rare disease. Complementary care may be used alongside standard treatments, while alternative medicine may be used instead of standard treatments. Examples of these include herbal supplements, acupuncture, or meditation. The following resources may help you find alternative ways to manage care.
If you can't find the rare disease resource you are looking for, GARD can help. Contact a GARD Information Specialist to support your search for the resources you may need. 
1-888-205-2311
Available toll-free Monday through Friday from 12 pm to 6 pm Eastern Time
(Except: Federal Holidays)
Contact GARD
Use the contact form to send your questions to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond.
If you can't find the rare disease resource you are looking for, GARD can help. Contact a GARD Information Specialist to support your search for the resources you may need. 
1-888-205-2311
Available toll-free Monday through Friday from 12 pm to 6 pm Eastern Time
(Except: Federal Holidays)
Contact GARD
Use the contact form to send your questions to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond.
About the Disease

Learn about symptoms, cause, support, and research for a rare disease. 

Getting a Diagnosis

Take steps toward getting a diagnosis by working with your doctor, finding the right specialists, and coordinating medical care.

Resources and Support

Find resources for patients and caregivers that address the challenges of navigating life with a rare disease.

Back

Last Updated: February 2024