Novellia to Present Real-World Research in Ehlers-Danlos Syndrome at the NORD Rare Diseases and Orphan Products Breakthrough Summit

Novellia will present a poster at the 2026 NORD Rare Diseases and Orphan Products Breakthrough Summit, taking place October 25–27 in Washington, D.C. The poster session takes place on October 26, 2026.

Ehlers-Danlos syndrome is a group of connective tissue disorders that can produce chronic pain, joint instability, and involvement of multiple organ systems. Many people with EDS see numerous providers over many years before receiving an accurate diagnosis. That delay leaves patients, clinicians, and even life sciences researchers without a clear view of whats happening to improve care and create new medicines.

Novellia helps patients gather their complete health records in one place, combining clinician notes and care history from every provider they have seen. People managing a condition like EDS see multiple specialists over many years. A complete view of that history in one place helps them track their care and bring better context to every appointment. Patients who use Novellia consent to the use of their de-identified data for medical research, contributing to evidence that can improve care for others living with the same condition.

Researchers receive consented, de-identified, longitudinal health records that reflect how patients experience care across providers and settings. For Ehlers-Danlos syndrome, where patients often see many specialists before receiving a diagnosis, research teams can use this data to study treatment patterns and disease progression in real-world practice. Our work in EDS centers on the lived experience of people managing a complex, multisystem condition, and this poster reflects that work.

Why the NORD Breakthrough Summit Matters

The NORD Breakthrough Summit brings together leaders across patient advocacy, biopharma, government, and research to share new data, methods, and policy developments in rare disease. Over 900 stakeholders attend each year, and the 2026 meeting marks the summit's 16th year as the premier U.S. gathering dedicated to rare disease and orphan product development (NORDSummit.org).

For Ehlers-Danlos syndrome, the meeting puts research in front of the people who design, fund, and review the studies that follow. Presenting here gives Novellia a chance to share how patient-authorized data can inform that work and to hear from the researchers and advocates it serves.

Frequently Asked Questions

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders caused by changes in the genes responsible for collagen and related proteins. EDS can affect the skin, joints, blood vessels, and organs throughout the body. Symptoms vary by subtype and can include joint hypermobility, chronic pain, skin that bruises or stretches easily, and fatigue. There are 13 recognized subtypes of EDS. Hypermobile EDS (hEDS) is the most common.

What is NORD?

The National Organization for Rare Disorders (NORD) is an independent nonprofit organization founded in 1983. NORD works to improve the health and lives of more than 30 million Americans living with rare diseases. The organization partners with over 350 disease-specific patient organizations and a network of more than 170 medical and research institutions across the United States.

What is the NORD Breakthrough Summit?

The NORD Rare Diseases and Orphan Products Breakthrough Summit is an annual conference organized by the National Organization for Rare Disorders (NORD). The summit convenes leaders across patient advocacy, pharmaceutical and biotech development, government, academia, and clinical research to discuss advances in rare disease diagnosis, drug development, policy, and patient access. The 2026 summit takes place October 25–27 in Washington, D.C., at the Grand Hyatt. Over 900 stakeholders attend each year.

When and where is the 2026 NORD Breakthrough Summit?

The 2026 NORD Rare Diseases and Orphan Products Breakthrough Summit takes place October 25–27, 2026, at the Grand Hyatt in Washington, D.C. Novellia's poster session takes place on October 26, 2026.

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