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LGDA Joins National Commission on Lymphatic Diseases to Spearhead Research and Patient Care

The lymphatic system, a critical part of the human body's immune response and fluid balance, has long been a subject of scientific curiosity and clinical investigation. Despite significant advancements in our understanding of its roles in conditions ranging from cancer to cardiovascular diseases, challenges in diagnosis, prevention, and treatment of lymphatic diseases persist. Recognizing the need for a dedicated focus on these issues, the National Institutes of Health (NIH) initiated the National Commission on Lymphatic Diseases (NCLD) in December 2023. This pivotal move aims to transform the landscape of lymphatic disease management and research.

The Inception of NCLD

The establishment of the NCLD by the NIH, particularly spearheaded by the National Heart, Lung, and Blood Institute (NHLBI), marked a significant milestone in lymphatic disease advocacy. Created in response to a directive from Congress, the commission's mission is to improve quality of life for individuals affected by lymphatic diseases through enhanced research and better clinical practices. Its goals are ambitious: to identify and diagnose conditions caused by lymphatic dysfunctions and to push forward the boundaries of lymphatic disease research.

LGDA's Role in the NCLD

The Lymphangiomatosis & Gorham's Disease Alliance (LGDA) is proud to be a part of the NCLD, working alongside a diverse group of researchers, doctors, and other stakeholders who treat and study complex lymphatic anomalies (CLAs). The involvement of LGDA ensures that the voices of patients and their families are heard at the highest levels of decision-making and research planning.

NCLD’s First Meeting and Public Engagement

A NCLD meeting took place on June 24th, an event that was pivotal not only for the members but also for the entire lymphatic disease community. Highlighting the commission’s commitment to transparency and inclusivity, the meeting was recorded and is available online.This meeting set the stage for a series of discussions and inputs from various stakeholders, emphasizing the NCLD’s open invitation for public input on numerous pressing issues.

Call for Public Input

The NCLD has opened the floor to the public to contribute their insights on several critical areas:

  • Community Inclusion: Identifying key groups and organizations that should be involved in NCLD’s outreach efforts.
  • Educational Imperatives: Outlining the types of information necessary to support educational initiatives and identifying how these resources can be accessed.
  • Patient Utilization Aids/Tools: Discussing how different tools can be used by patients to meet their health needs and how to ensure these tools are accessible.
  • Scientific Advancement: Identifying existing gaps in research and opportunities for the development of new diagnostics and therapies.

How to Get Involved

Stakeholders including patients, caregivers, healthcare professionals, researchers, and industry experts are encouraged to share their experiences and suggestions. The insights collected will be crucial in addressing the identified gaps in research, understanding barriers to progress, and exploring opportunities for collaboration and innovation in the treatment and prevention of lymphatic diseases.

Moving Forward

As the NCLD continues to gather public input and refine its strategies, the involvement of organizations like LGDA is vital in ensuring that the patient perspective remains at the forefront of all discussions and decisions.

This is a defining moment for the lymphatic disease community. The formation of the NCLD underlines a collective commitment to not only understand but also significantly improve the lives of those affected by lymphatic diseases. The journey ahead is promising, and the contributions from all sectors of the community are invaluable in this collective endeavour.

For those interested in viewing the meeting or contributing to the ongoing discussions, please visit here for the video and here for the feedback submission page which is accepting responses through 11:59:59 pm (ET) on Friday, June 28, 2024. 

Your voice matters, and together, we can make a difference.