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?

You Are Not Alone

Rare diseases are not rare. About 30 million people in the U.S. are affected by a rare disease. As you and your caregivers adjust to a rare disease diagnosis, it is normal to be flooded with a wide range of emotions. Navigating unexpected challenges, coordinating care, and  handling financial concerns may feel overwhelming. GARD recognizes coping with a rare disease diagnosis is a continual process and your needs may change over time. Here, find resources to connect you with practical, financial, and emotional support during this process.
Keep On Fighting

You Are Not Alone

Rare diseases are not rare. About 30 million people in the U.S. are affected by a rare disease. As you and your caregivers adjust to a rare disease diagnosis, it is normal to be flooded with a wide range of emotions. Navigating unexpected challenges, coordinating care, and  handling financial concerns may feel overwhelming. GARD recognizes coping with a rare disease diagnosis is a continual process and your needs may change over time. Here, find resources to connect you with practical, financial, and emotional support during this process.Rare diseases are not rare. About 30 million people in the U.S. are affected by a rare disease. As you and your caregivers adjust to a rare disease diagnosis, it is normal to be flooded with a wide range of emotions. Navigating unexpected challenges, coordinating care, and  handling financial concerns may feel overwhelming. GARD recognizes coping with a rare disease diagnosis is a continual process and your needs may change over time. Here, find resources to connect you with practical, financial, and emotional support during this process.
Keep On Fighting

Patients and Caregivers

Patients and caregivers living with a rare disease may face similar challenges when navigating everyday life. In the next two sections, find tips and resources to become better informed and help you overcome some of these challenges. Learn more about:
  • Financial concerns  
  • Accessing care
  • Navigating health insurance
  • Education and employment
  • Disability services
  • Mental health and self-care
  • Improving care and quality of life

Patients and Caregivers

Patients and caregivers living with a rare disease may face similar challenges when navigating everyday life. In the next two sections, find tips and resources to become better informed and help you overcome some of these challenges. Learn more about:
  • Financial concerns  
  • Accessing care
  • Navigating health insurance
  • Education and employment
  • Disability services
  • Mental health and self-care
  • Improving care and quality of life

Patient Resources

Being diagnosed with a rare disease can place a significant burden on a patient and their caregivers. Impacts can be widespread, affecting finances, access to care, everyday responsibilities, and mental health. The following resources can help address some of these common challenges.

These resources are listed for information purposes only. Inclusion on this list does not reflect an endorsement by GARD or the NIH.

Caregiver Resources

Caregivers have many responsibilities, often helping with daily life activities, nursing tasks, care coordination, and difficult decision-making. Navigating these responsibilities can cause caregivers to feel overwhelmed or alone. The following organizations, websites, and articles aim to help caregivers organize support and adapt to changing needs.

These resources are listed for information purposes only. Inclusion on this list does not reflect an endorsement by GARD or the NIH.
Caregivers have many responsibilities, often helping with daily life activities, nursing tasks, care coordination, and difficult decision-making. Navigating these responsibilities can cause caregivers to feel overwhelmed or alone. The following organizations, websites, and articles aim to help caregivers organize support and adapt to changing needs.

These resources are listed for information purposes only. Inclusion on this list does not reflect an endorsement by GARD or the NIH.
Caregivers have many responsibilities, often helping with daily life activities, nursing tasks, care coordination, and difficult decision-making. Navigating these responsibilities can cause caregivers to feel overwhelmed or alone. The following organizations, websites, and articles aim to help caregivers organize support and adapt to changing needs.

These resources are listed for information purposes only. Inclusion on this list does not reflect an endorsement by GARD or the NIH.
Caring for Yourself

How Can You Create Time For Yourself?

How Can You Support Your Emotional Health?

How Can You Connect With Other Caregivers?    

Caring for Others

Where Can You Find Home Health Care Support?

How Can You Optimize Your Home for Caregiving?

How Can You Build a Community of Support?

Making Informed Health Care Decisions

As you navigate supplemental care options, it is important you make informed health care decisions to ensure you receive the care you want and need. For example, you may consider exploring alternative types of care alongside traditional medicine, or you may be interested in connecting with patient-centered organizations that focus on enhancing health care quality. To make informed health care decisions at every stage of your journey, it is important to know what care options are available, and where to find reliable resources.

Exploring Complementary Care

How do you find accurate and reliable information?

What should you consider when evaluating complementary care?

How can you learn more about alternative treatments used in complementary care?

Exploring Complementary Care

How do you find accurate and reliable information?

What should you consider when evaluating complementary care?

How can you learn more about alternative treatments used in complementary care?

Transitioning Care

Is Your Child Transitioning From Pediatric to Adult Care?

Does Your Child Have Special Health Care Needs?

Palliative and Hospice Care

How Can You Learn More About Palliative and Hospice Care?

Are You Preparing for Hospice Care?

Accessing Investigational Treatments

What is expanded access?

What is off-label use?

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. 
Available toll-free Monday through Friday from 12 pm to 6 pm Eastern Time
(Except: Federal Holidays)
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. 
Available toll-free Monday through Friday from 12 pm to 6 pm Eastern Time
(Except: Federal Holidays)
Use the contact form to send your questions to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond.

Last Updated: January 2024