Rare Lung Disease II

HomePatientsLung Disease Week at the ATS2014 ▶ Rare Lung Disease II
Rare Lung Disease Week


Welcome Message

Welcome to “Rare Lung Disease Week at the ATS” which is cosponsored with the Hermansky-Pudlak Syndrome Network and other patient advocacy organizations that participate in the ATS Public Advisory Roundtable (PAR). Rare Lung Disease Week provides an opportunity for patients and families who are impacted by these conditions to increase awareness of them among physicians and the general public.

In addition to the direct medical burdens imposed by them, rare diseases also provide additional challenges. First, delays and confusion in diagnosis are distressingly common. Second, after a diagnosis is made, patients often can learn few details about a specific condition of which most physicians have little first-hand experience. Third, research funding generally is focused on common conditions that broadly impact the population. While understandable, the research community’s relatively slow progress in achieving greater understanding and improved therapies of more rare conditions can be extremely frustrating to patients and clinicians alike. 

The ATS and its PAR partners are committed to promoting progress in the awareness, understanding, and treatment of rare lung diseases such as Hermansky-Pudlak Syndrome. In addition to the compelling needs of individual patients with rare lung diseases, insights gained from greater understanding of them may ultimately be applicable to the treatment of more common conditions as well. The goal is to forge a powerful alliance between patients, families, researchers, clinicians, and funding agencies in order to optimize the diagnosis and management of rare pulmonary conditions.  


Jess Mandel, MD
Member, ATS Board of Directors


Donna Appell, RN
Founder and President,
Hermansky-Pudlak Syndrome Network
Member, ATS Public Advisory Roundtable

ATS Rare Lung Disease Partner


The mission of the Hermansky-Pudlak Syndrome Network is to gather and disseminate information, to promote awareness and research, and to provide support to our members. This keeps us actively developing educational materials, pamphlets, slides, and articles to help both families and professionals understand the needs created by this syndrome. We maintain a client registry to assist with networking individuals, with each other and with medical research.