The Living Rare Survey is an online research program designed for people and caregivers impacted by rare diseases to share information about their experiences. This long-term study involves community members directly, ensuring that patients and caregivers are partners in advocating for change. The study aims to follow thousands of people to share their perspectives, helping to illustrate the immense challenges associated with rare diseases and collect important information related to:
- Healthcare issues
- Diagnosis and care
- Quality of life
One in 10 Americans live with a rare medical condition, but data is lacking to demonstrate a holistic understanding of the rare disease experience. Rare diseases impact people beyond physical illness, affecting emotional, financial, and social aspects of life for patients, families, and caregivers.
Until now, there has been no way to measure the wide-ranging unmet needs faced by individuals and families dealing with rare diseases, and how these needs change over time. Similar data exists for other public health priorities, such as cancer, diabetes, and lung disease. The goals of this study include:
- Establishing a baseline understanding of the experiences of the rare disease community.
- Determining the impact of location, financial income, and other non-medical characteristics on health outcomes.
- Assessing changes in experiences over time.
- Investigating the impact of access, policy, and care differences on the rare disease community.
The study is open to people living in the U.S. who have been diagnosed with a rare disease or suspect they may have one, as well as their caregivers.
Yes, parents and caregivers with legal authorization to make decisions for individuals living with a rare disease are encouraged to participate in the Living Rare Study.
When your child turns 18, they will need to sign the participant consent forms to continue participating. They will need to register, obtain their own account, and request to transfer their parent’s account to them within the platform.
This study is open to individuals diagnosed with a rare disease and those who are undiagnosed but suspected of having one.
Currently, we are collecting information directly from individuals with a rare disease and/or their caregivers, who must be legally authorized representatives (e.g., parents, spouses, or family members).
While the study focuses on current experiences, we recognize the valuable insights of former caregivers. Future research may expand to include former caregivers and grieving families.
To join the Living Rare Study, you will be asked to read and sign the participant consent forms. These forms outline the program, your rights, and what to expect. The survey gathers data about experiences related to:
- Access to and management of healthcare.
- The impact of rare disease on daily life, including work, school, and finances.
- The effects of rare diseases on emotional, physical, and social well-being.
The survey takes approximately 1 hour to complete. You can work at your own pace and save your progress. We recommend that you complete the survey within one week of starting. Annually, you will review and update your responses. If your contact information changes, you can update it at any time.
NORD will not share any information that could identify individual participants. The Living Rare Study is hosted on NORD’s IAMRARE® platform, compliant with HIPAA and designed with best practices for data security.
Your data will always be accessible on the platform. If you realize you’ve submitted inaccurate information, please notify the study team at LRStudy@rarediseases.org.
The data collected is owned by NORD and will be used to:
- Translate patient experiences into facts that illustrate the impact of rare disease.
- Identify key areas of need to inform programming and data-driven solutions.
- Create a collective voice for the rare disease community.
NORD will share research updates with participants and publish our findings to effectively address our mission and support the health and well-being of people living with a rare disease.
All data, including Personal Health Information (PHI), will be stored securely. Access will be limited to:
- Approved members of the Living Rare Study team.
- NORD staff, with permission from Study staff.
Your privacy will be protected, and data requests from researchers will be evaluated by the Study Advisory Board.
We want to keep you informed about our findings. You can:
- Log onto the survey platform to view your data and latest trends.
- Receive updates via email when significant findings are published.
- Join online events to discuss updates and share experiences.
There is no financial cost to sign up or participate.
You will not be compensated for participation.
The Living Rare Survey is not a clinical trial. For information about clinical trials, visit rarediseases.org/advancing-research/.
Yes, participation is voluntary. If you need to withdraw, please contact LRStudy@rarediseases.org. Researchers may still use your provided information.
We strive for diversity by:
- Evaluating language and digital accessibility needs.
- Working with local partners to reach diverse communities.
- Conducting outreach programs and listening sessions.
NORD will continue to seek a better understanding of all experiences within the rare disease community.
Collecting demographic information allows us to detect trends and understand different lived experiences with rare diseases. This data will help raise awareness and identify resources for unmet medical needs.
Research and medical partners can share information about the study with patient organizations, patients, caregivers, and patient advocates. If your institution is interested in collaborating, please contact LRStudy@rarediseases.org.
The Living Rare Study needs your help to engage more participants. You can use our toolkit that contains sample social media posts and other resources to spread the word.