Care & Support

Information on caring for yourself or others affected by rare disease.

Manage your care

Build your team

Find qualified health care providers, including specialists. Learn what to say and how they can help you.

Get to a diagnosis

Discover what you can do for yourself, your child, or a loved one as you work to identify your condition.

Improve your quality of life

Put yourself first. Learn ways you can manage your entire well-being.

Get support

Access care and pay for related costs

Explore options for low- and no-cost care and travel, lodging, and equipment.

Connect with patients and families

Find organizations that can offer support and access to specialists, research, and aid.

Care for others and yourself as a caregiver

Manage your daily responsibilities while taking care of your own needs.

Cope with loss

Get help when you're grieving your diagnosis or a loved one dies.

Further rare disease research

RaDaR enables collaborative sharing of information and tools to promote data standardization and integration from the earliest stages of registry development.

Learn about RaDaR