Questions about rare diseases?
1-888-205-2311
Questions about rare diseases?
1-888-205-2311

Patient Resources

The impacts of living with a rare disease 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 living with a rare disease.

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.

Apps to assist caregivers:

Resources for caring for others:

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.

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?

Ninety-five percent of rare diseases lack an FDA-approved treatment. There may be alternatives to seek out treatment options for your rare disease. The following resources may better inform you of what options are available.