RLDC2018 is an innovative conference that will engage diverse stakeholders involved in research and clinical care of patients with rare lung diseases (RLDs) for the purpose of accelerating the advancement of RLD scientific research as well as education of clinicians caring for RLD patients. The long term objective of the Rare Lung Diseases Consortium (RLDC) is the development of pathogenesis-based diagnostics and therapeutics for ?near- term? patient benefit. The specific objective of this conference is to increase communication and collaboration among patients, their clinicians, and RLDC researchers in order to accelerate advancement of scientific research, improve clinical care, and increase advocacy for individuals suffering from RLDs. For over two decades, the RLDC and patient advocacy partners have promoted education and the dissemination of knowledge about RLDs through periodic conferences. Our central hypothesis is that promoting communication among patients, clinicians, scientists is a crucial aspect of accelerating advancement of RLD research. The rationale for this proposed conference is founded on our past experience and the very positive effects that have followed from the robust collaborations among RLD stakeholders ? patients, clinicians, and investigators. This hypothesis will be addressed in the following Specific aims: 1. Review recent research advances for RLDs under study within the RLDC 2. Reach consensus on cutting edge concepts related to the diagnosis and treatment of RLD patients 3. Provide continuing medical education (CME) credits to physicians caring for RLD patients 4. Facilitate the translation of RLDC research into clinical practice ?in real time?. 5. Provide patients/advocacy partners a ?seat at the table? in the planning and conduct of RLD research 6. Consider incorporation of emerging technologies to accelerate advancement of RLD research 7. Attract new investigators into the field and promote globalization of clinical research for RLDs The expected outcome is that the RLDC2018 will be the largest and most comprehensive international scientific research meeting focused to rare lung diseases ever held, with attendance by RLD-CN Clinic Directors, RLD clinicians, researchers, trainees, RLD patients, and their families. Anticipated results include globalization of the RLD research community, improving patient advocacy, and introducing novel technologies that can be applied to RLDs. The positive impact of this meeting is expected to be acceleration of the advancement of RLD research ? by fostering scientific communication and collaboration, on RLD care providers ? by improving their knowledge about new diagnostics and therapeutics, and on RLD patients ? by increasing their understanding about diseases affecting them and by incorporating their unique and detailed personal knowledge about RLDs to provide guidance for ongoing and future RLD research.
(three sentences for general public) Rare diseases involving the lungs affect at least 1 to 2 million Americans and thus, in aggregate, are not so rare. Our understanding of the causes and treatments of these diseases will be increased by bringing together world leaders and patient representatives to evaluate approaches to diagnosing and treating these diseases. The specific objective of this conference is to increase communication and collaboration among patients, their clinicians, and RLD researchers in order to accelerate advancement of scientific research, improve clinical care, and increase advocacy for individuals suffering from RLDs.
