Supporting Rare Disease Patients 24/7
Located in Research Triangle Park in North Carolina, The Dash Alliance works to support rare disease patients and families through the creation of collaborative stakeholder relationships.
Though we work to build disease-specific community resources, we are also focoused on the creation of resources that serve the global rare disease population as a whole.
Our story began in June 2009, four months after the birth of our daughter, Cambria.
After an uneventful pregnancy, Cambria was born with jaundice and hypoglycemia but quickly recovered and went home.
Months later, Cambria suffered an adrenal crisis at home and was rushed for emergency medical treatment. After nearly a week in the hospital, she was diagnosed with multiple rare diseases and discharged with little information and no clear care plan, despite the serious nature of her diagnosis.
After extensive research at home, it became clear that Cambria would need specialized care in an emergency medical situation. The level of detail her care required was far beyond what traditional medical alert systems offer so we began searching for an alternative. When we couldn’t find a suitable option, we created our own.
We began using QR code medical stickers and IDs in 2016, giving copies of our daughter’s QR code to grandparents, teachers, and our daughter’s school nurse. We plastered the QR code on the insides of our car windshields and on Cambria’s medication bottles, determined that her care should never be delayed due to an information accessibility issue.
A Clear Mission
After several years of hosting QR-based profiles for Cambria and small patient populations under MobiMedQr, we decided to relaunch as My Rare ID in 2022 for all rare disease patients.
“We have to go beyond what traditional medical alert programs offer because rare disease patients have needs that go far beyond the typical emergency. Our digital health IDs are created to not only provide important health details to first responders but to go above and beyond with the depth and quality of info we’re providing,” said Eden Lord, Founder & CEO. “For us, this is not just a business, this is personal.”
At My Rare ID, we demonstrate our commitment to the rare disease community by not only investing in ongoing research and solutions but partnering with rare disease patients and organizations. That’s why we not only created My Rare ID to support rare disease patients and save lives, but we also built it to create a sustainable fundraising mechanism for the rare disease organizations we partner with. Our Rare Partners program ensures that not only do rare patients have access to affordable digital IDs, but that the organizations supporting patients receive ongoing financial support as well.
Frequently Asked Questions
Your profile is available using your ID and Pin number or by scanning your FlowCode. In order to edit your profile, you’ll need to login for edit access.
Patients own their medical data. My Rare ID acts as a digital hosting platform for patient data and does not claim ownership of any patient data. For patients who are interested in opting-in to share their information for research purposes, all profiles are de-identified prior to use and sharing permissions can be revoked at any time.
Your profile can be viewed by caregivers, family, physicians, or anyone else you choose to share your information with. In a medical emergency, your profile may be accessed by EMS or emergency room physicians in order to access your critical medical details.
My Rare ID is dedicated to supporting rare disease patients with 24/7 access to their digital health records, expediting emergency medical treatment, and preventing medical errors. When your non-profit joins our “Patient Partners” network, you’ll receive exclusive access to community updates and become a valued member of our affiliate network while enjoying ongoing earnings through our affiliate program.