Throughout my journey as a rare disease patient, I have often heard the phrases of how resilient and strong we are as a patient population. While most people intend to utilize these phrases as a positive, there is something that is often missed within these assessments— how isolated you can feel while still belonging to a community.

I have had the honor of being asked to serve as the co-lead of the patient advocacy group for the Advancing Rare Disorders: Vascular mAlformation Research Network with CaNVAS (ARDVARC) Research Group, which was newly welcomed into the RDCRN this year. This group focuses on multiple vascular and lymphatic diseases, which are inclusive of PIK3CA-related overgrowth spectrum with vascular malformations (PROSvm), extracranial arteriovenous malformations (eAVMs), and complex lymphatic anomalies (CLA).

Within this role, one of my first tasks was to work with my co-lead to help identify patients across these diseases who would be interested in serving as patient advocates across the various studies and projects being run by ARDVARC. As patient organizations have historically been disease-focused within these diagnoses, this involved connecting deeper across organizations to identify volunteers. In doing this, we were able to deepen the connections across the patient organizations.

It was exciting to be able to meet the leaders of these groups in person this past May as we were all in attendance at the International Society for the Study of Vascular Anomalies (ISSVA) World Congress 2026, an international conference focused on expanding research and care for our diseases.

Beyond the connections across the patients, it has been wonderful to connect with researchers and clinicians across the ARDVARC projects. Working with my fellow patients to help provide insights and input into the early stages of the projects has helped ignite hope and unity. Participating with my fellow patients, researchers, and clinicians through ARDVARC has helped me feel more connected and engaged, reducing the feelings of isolation.