The Dash Alliance works to support patients and families living with a rare disease diagnosis. DASH (Digital Assets Supporting Health) is more than our name, it's at the heart of what we do.
At Dash, we know that collaboration is the key to developing supportive rare disease communities. That's why we work with patients, families, non-profits, physicians, researchers, and other stakeholders to create platforms for collaboration, networking, and resource sharing.
The Dash Alliance was formed by Eden and Jeff Lord after the birth of their daughter Cambria in 2009 and her subsequent rare disease diagnosis at only 4 months of age.
Since her diagnosis, Cambria's family have become medical tourists, seeking expert care for their rare daughter. Cambria and her family have traveled the US from Children's Mercy in KC to Texas Childrens, and the NIH to Mayo Clinic, finally landing at Duke in Durham, North Carolina.
Eden Lord, Founder and CEO of The Dash Alliance, has acted as a rare disease caregiver since 1993, caring first for her mother, then her father. She worked as an economist for the Army Corps of Engineers and spent time as a tax accountant for a Midwest-based energy company before spending over 15 years in higher education, developing degree programs and writing course curriculum for adult learners.
Dedicated to patients and families, she works to shorten the path to diagnosis while building support networks for rare disease stakeholders. Learn more about her work here.
Jeff Lord, Co-Founder and CTO, brings over 35 years of IT management experience from his work in life sciences with biotech firms, non-profit organizations, and government agencies.
Most recently he has overseen the implementation of patient registries, natural history studies, virtual event planning and hosting for various rare disease organizations. He brings extensive experience in leading projects for large scale data lake initiatives, data warehousing, infrastructure designs and wide area network implementations, with an emphasis in data management, cyber security, and software development.