ATS PAR Row: Your Connection to Patients

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Advocates from the Hermansky-Pudlak Syndrome Network will be among participants in the ATS PAR Row.

Beyond the many devices and treatments showcased in the Exhibit Hall to help improve the lives of your patients, ATS 2014 also gives you the opportunity to interact directly with patient advocacy organizations. Meet with patients, patient interest groups, and advocates in the ATS Public Advisory Roundtable Row, where you’ll gain valuable insights into the patient perspective.

Founded in 2001, ATS PAR consists of 15 member organizations, which represent patients affected by respiratory diseases, sleep-related conditions, or related critical illnesses. The group collaborates with the ATS to advance their shared education, research, patient care, and advocacy missions. The ATS PAR members are located next to the ATS Center.

While there, pick up patient information and learn how ATS PAR groups can help your patients. Among the responses in a survey of those who visited with PAR representatives last year, one said: “I found the booths representing foundations a great resource, which will affect my and my patients work.”

Having a presence at the ATS International Conference is invaluable to the Hermansky-Pudlak Syndrome Network, says Donna Appell, RN, president and founder of the network, a longtime PAR Row member, which will be in Booth 4039.

“PAR Row gives us an exceptional opportunity to meet and speak with the world’s experts in lung research,” Ms. Appell says. “Direct conversations with the attendees enable us to thank them for their dedication to lung health and inspire them to continue their work. Immersing ourselves in the ATS community allows for an unprecedented transfer of knowledge and experience that we could find nowhere else.”

Its mission is to gather and disseminate information, to promote awareness and research, and to provide support to its members. This keeps the group actively developing educational materials, pamphlets, slides, and articles to help both families and professionals understand the needs created by this syndrome. The organization maintains a client registry to assist with networking individuals, with each other, and with medical research.

A member of PAR for eight years, the Coalition for Pulmonary Fibrosis, in Booth 4138, has been fighting for patients with idiopathic pulmonary fibrosis and the experts who treat them for more than a decade.

The Coalition for Pulmonary Fibrosis is collecting information to support potential changes for patients, including the FDA’s possible 2014 approval of the first drugs for IPF. Also, new legislation is being created and will soon be introduced in Congress to create the first Fibrosis Across Organs effort to encourage and accommodate collaborative research efforts.

The organization seeks ATS 2014 attendee input regarding how best to provide education about therapies and the disease itself through the use of the recent ATS/ERS/JRS/ALAT IPF Guidelines, as well as what which legislative efforts participants are most vital to moving research forward.

Also among the 15 member organizations will be the Lymphangiomatosis & Gorham’s Disease Alliance, which will feature information about its new International Lymphatic Malformation Patient Registry and its biobank in Booth 4038. The registry was developed in conjunction with the NIH/NCATS/Office of Rare Disease Research. Also learn about a clinical trial and a recently formed partnership with the LAM Foundation to use the LAM Clinical Network, which includes 28 U.S. clinical sites and 11 international sites for the organization’s adult patient community.

The ATS Public Advisory Roundtable will host its eighth annual Meet-the-Experts patient-family forum during ATS 2014. The event gives patients the opportunity to learn from and speak with leading physicians, researchers, and community organizers.

This year’s event will focus on “Living Your Best Life with Lung Disease” and will be from 10 a.m. to 2 p.m. Saturday, May 17, at the Manchester Grand Hyatt Hotel, Grand Hall A-D (Lobby Level), 1 Market Place.

After presentations from eight physicians, attendees will take part in breakout sessions focusing on pulmonary hypertension, sarcoidosis, lung transplantation, pulmonary fibrosis, Hermansky-Pudlak Syndrome, sleep disorders, and scleroderma. The 16 experts participating will be available to answer questions.

You are encouraged to attend and tell your patients about the Meet-the-Experts forum and learn more about ATS PAR.