The National Commission on Lymphatic Diseases (NCLD), established in 2023, hosted a virtual Town Hall Forum on December 2, 2024. This event provided an inclusive platform for individuals living with lymphatic diseases, as well as advocates, researchers, and healthcare professionals, to share experiences and insights. Participants highlighted the challenges they face in accessing effective healthcare and support, fostering community connections and inspiring collective action to advance shared goals.
Forum Highlights
The Town Hall brought together leading experts and patient advocates to explore advancements and challenges in managing vascular and lymphatic anomalies, including Complex Lymphatic Anomalies (CLAs). Key contributors included:
- Dr. Michael Dellinger, Director of Research for the Lymphatic Malformation Institute (LMI), who underscored the critical role of research in driving discoveries and improving patient care.
- Liz Bovee, a CLA patient advocate, who shared her personal journey navigating the healthcare system and the barriers faced by patients with CLAs.
- Will’s Power Foundation, which showcased Will’s inspiring story of resilience and determination in the face of Generalized Lymphatic Anomaly (GLA).
Key Contributions
1. Research and Advocacy by LMI and LGDA
Dr. Michael Dellinger highlighted the significant impact of research spearheaded by LMI and the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA). Since 2010, LMI has invested over $5 million in CLA research, leading to groundbreaking discoveries, such as identifying somatic mutations in PIK3CA as a genetic cause of CLAs. He called for increased funding, enhanced diagnostic tools, and more accessible multidisciplinary care for CLA patients.
2. Patient Perspectives
Liz Bovee provided a powerful account of her experience as a CLA patient. Her story revealed systemic challenges, including delayed diagnoses, dependence on pediatric care into adulthood, and the financial burden of targeted therapies. She emphasized the pressing need for expanded treatment options with fewer side effects and improved access to specialized care.
3. Will’s Power Foundation: A Beacon of Hope
The story of Will, shared by Will’s Power Foundation, highlighted the indomitable human spirit in the face of daunting health challenges. Will’s courage and determination inspire ongoing efforts to improve care and create meaningful change in the CLA community.
Challenges in CLA Research and Care
- Delayed Diagnosis and Access to Care
- Patients often endure prolonged diagnostic journeys due to limited awareness and expertise in local medical systems.
- Limited Treatment Options
- Current therapies are effective for some but frequently accompanied by severe side effects, underscoring the need for safer, more effective options.
- Resource Gaps
- The scarcity of genetic testing and centralized registries hinders research progress and patient outcomes.
Calls to Action
- Increase Funding and Collaboration: Resources are needed to investigate molecular mechanisms, develop biomarkers, and create targeted treatments for CLAs.
- Expand Adult Care Infrastructure: Establishing adult-focused centers of excellence can bridge gaps between pediatric and adult care.
- Empower Patients: Education and stronger connections between patients, clinicians, and researchers are vital to fostering a supportive community.
Collaboration Across Organizations
In addition to the efforts of LMI and LGDA, other groups such as the CLOVES Syndrome Community, RASopathies Network, and Sturge-Weber Foundation, along with international organizations like ISSVA (International Society for the Study of Vascular Anomalies), are making significant contributions. Together, these organizations are raising awareness, advancing research, and improving access to care for vascular and lymphatic anomalies. Their collaboration is key to driving progress and inspiring hope for improved diagnostics, treatments, and, ultimately, a cure.
View the Forum Recording
The full forum is available to view online: Watch the Recording.
