Undiagnosed Patient Bill of Rights

Every person navigating an undiagnosed condition deserves compassionate, informed, and effective care. This Bill of Rights affirms reasonable and just expectations of undiagnosed patients and their caregivers, regardless of how long their journey has taken, how complex their case may be, or where they are seeking care.

Article I  The Right to Your Own Health Data

You have the right to access, obtain copies of, and fix mistakes in your health information, including laboratory results, imaging, clinical notes, and genomic or genetic sequencing data. You have the right to know how it is used, stored, and shared.  For data that is generated through a research study or non-clinical lab, the rules of access differ; it is your responsibility to review your consenting documents and ask questions to understand the access rules and limitations, including sharing of your data beyond the study.

Article II  The Right to Be Believed

You have the right to have your symptoms, experiences, and suffering taken seriously. Your reported pain, fatigue, cognitive difficulties, and functional limitations are real and valid, regardless of whether a unifying diagnosis has been established.

Article III  The Right to Speak Freely Without Fear of Judgment

You have the right to express your wants, needs, fears, and frustrations openly and honestly with your care team. No question is too small, too strange, or too emotional. You should never feel ashamed of advocating for yourself or sharing how your condition affects your life.

Article IV  The Right to Ongoing Medical Care

You have the right to expect ongoing medical care for symptom relief to the extent that it is accessible.  You have the right to receive medical care for conditions that are unrelated to your undiagnosed condition (e.g. injuries, common medical conditions) without fear of being denied care because you have an undiagnosed condition.

Article V  The Right to Ask Questions and Understand Your Care

You have the right to ask questions and to receive clear, plain-language explanations of any test, procedure, diagnosis, or treatment being administered or considered. If you do not understand something, you have the right to ask questions until you do.

Article VI  The Right to a Second Opinion

You have the right to seek additional medical opinions from other providers, specialists, or centers of excellence. Seeking another perspective is not a sign of distrust; it is a sign of an informed and empowered patient.

Article VII  The Right to Change Medical Providers

With the exception of healthcare coverage limitations or emergency care, you have the right to choose your own medical providers.  You have the right to request restrictions on how your health information is used or shared going forward and you may revoke authorizations you have previously granted. 

Article VIII  The Right to Know Your Options

You have the right to be informed of all available diagnostic pathways relevant to your situation, including specialist referrals, advanced testing, including genetic sequencing, rare disease registries and natural history studies, and clinical trials.

Article IX  The Right to Informed Consent and Refusal

You have the right to make informed decisions about your care. You have the right to consent to or decline any test, procedure, treatment, or research study and to have that decision respected.

Article X – The Right to Cost Transparency

You have the right to receive clear, good faith estimates about the costs of tests, procedures, and treatments associated with your care. You have the right to ask about your financial obligations before consenting to any service, and to receive plain-language explanations of benefits and estimated out-of-pocket expenses. Financial barriers should never prevent you from asking questions or making informed decisions about your care. If you are participating in a research study, you have the right to understand which costs are covered by the study and which may be your responsibility.

Article XI  The Right to an Advocate or Support Person

You have the right to bring a trusted family member, friend, caregiver, or patient advocate to your appointments. Unless by your choice, you should not have to face complex medical conversations alone.

Article XII  The Right to Mental Health and Emotional Support

You have the right to mental health support; it is reasonable to expect to be referred to appropriate resources. The diagnostic journey can be exhausting, isolating, and deeply distressing and your emotional wellbeing matters.

Article XIII  The Right to Dignity and Respect

You have the right to be treated with dignity, compassion, and respect at every point of care, regardless of your diagnostic status, the complexity of your case, appearance, mental health history, or socioeconomic, racial/ethnic background or other demographics. Being undiagnosed does not make you less deserving of excellent care.

Article XIV  The Right to Culturally- and Linguistically-Appropriate Care

You have the right to receive care that is sensitive to your cultural background, beliefs, and values. You have the right to an interpreter or translated materials if English is not your primary language.

Article XV The Right to Continuity of Care

You have the right to good faith efforts to deliver coordinated care across specialties and medical providers. You deserve ongoing support, follow-up, and as clear a path as is possible regardless of your diagnostic status.