LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

LGDA is uniquely positioned to unite the scientific, medical, and patient communities to develop, pilot, and implement patient-centered norms for care. We expect this will increase awareness of CLA and best practices for diagnosis and treatment, and drastically improve the quality-of-care patients receive globally.
We will establish and international committee to oversee the guideline development and promotion process. Members will include medical experts, patients and representatives of key partner organizations and medical societies. Guidelines will be developed using current best evidence and multidisciplinary consensus to prioritize recommendations.

Once developed and approved the guidelines for care will be widely disseminated in the medical and patient communities. They will be translated into several languages to facilitate global dissemination. We will ensure our guidelines are widely accessible without subscription.

LGDA serves as the nexus between patient, scientific, medical, and industry networks. We identify innovative researchers and help them secure funding, publish their work, and share it with peers and the patient community. We ensure that the patient community has a voice in shaping patient-centered research outcomes. We foster collaboration between these groups to strengthen the broader CLA community’s understanding of current research.

We partner with our patients, key organizational partners and with our medical and scientific advisory committee, to identify gaps in research that should be targeted for further investigation and funding.
LGDA identifies and supports promising young researchers who are undertaking innovative research early in their careers to nurture their interest in CLA, and to create a pipeline of next generation researchers.

We create patient-friendly research summaries and ensure that research is accessible and clear to all audiences.