This summer the Pulmonary Hypertension Association was busy raising PH awareness at important medical conferences in the U.S. and Asia.
American Association of Critical-Care Nurses (AACN)
In May, Joy Beckmann, R.N., M.S.N., and Chair of the PH Resource Network, and PHA’s Michelle Gill attended the American Association of Critical-Care Nurses (AACN) annual conference and exhibited at our PHA booth. This was a unique opportunity to reach an audience of medical professionals, the majority of which are not directly involved with PH centers or with PHA, but nonetheless see patients with pulmonary hypertension. Joy commented that “[The nurses] were very excited to get information about PHA, PH Resource Network and copies of the medical journal. I am glad we could be there to help.”
American Thoracic Society (ATS)
Also in May, members of the PHA staff attended the International Conference of the American Thoracic Society (ATS) in San Francisco, Calif., which offers the latest information on respiratory disease and lung health for physicians, scientists, and allied health professionals. PHA staff exhibited at the conference and were impressed by the number of medical professionals who stopped by the booth for information on PH.
Additionally, PHA is a member of ATS Public Advisory Roundtable (ATS PAR), a group of patient organizations that works together with ATS. ATS PAR held its first ever patient-family gathering at the ATS conference this year. The gathering featured presentations by two members of the PHA community – Judy Simpson, PHA board member and Chair of ATS PAR, and Liberty Tillemann-Dick, sister of PH patient and singer Charity Sunshine Tillemann-Dick.
During the Assembly on Pulmonary Circulation meeting, Dr. David Badesch, Chair of PHA’s Scientific Leadership Council and Chair of the ATS Assembly on Pulmonary Circulation, presented PHA President Rino Aldrighetti the prestigious Leadership Award for his work with PHA and dedication to the PH community. In addition to all of this, PHA had their own events planned. The SLC Journal Editorial Committee who produces Advances in Pulmonary Hypertension each quarter met during the conference to discuss upcoming issues and future topics. There was also a reception held for people with close ties to PHA in the San Francisco area.
ATS is a wonderful opportunity for members of the PHA community to come together. It is a chance for PHA to connect with ATS attendees and further reach out to physicians, nurses, and other medical professionals by providing them with information on PH diagnosis and treatment.
PHA & PHA China Medical Education Sessions
PHA alongside with PHA China hosted a Medical Education Session tour of three Chinese cities (Guangzhou, Shanghai, and Beijing). These sessions were based on PHA’s popular annual 6 city Medical Education Sessions in the U.S. and were supported by Actelion Australia & Asia Pacific. Guest speakers included PHA Board Chair Dr. Mike McGoon & PHA SLC Chair Dr. David Badesch as well as specialists from around China. PHA President Rino Aldrighetti also spoke at each session giving a presentation about PHA.
Following the Medical Education Sessions, Rino attended and spoke at the 2nd annual PHA China patient meeting.
Rino was also invited to speak, alongside PHA China founder Dr. Zhi-Cheng Jing at a press conference during the meeting. 20 newspapers were present at the press conference, articles about the meeting appeared in many Chinese language newspapers as well as the English language newspaper China Daily.
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PH Awareness in Taiwan
Rino then flew to Taiwan where he had several meetings with some prominent physicians and the leadership of the Tawian Foundation for Rare Disorders (TFRD), which recently translated parts of PHA’s Patient Survival Guide into Traditional Chinese for patients in Taiwan. Rino also met with officials from the Taiwanese PH Association (TiPAH), which operates under the auspices of TFRD. The meetings helped us to gain a better understanding of the state of PH and PH patients in Taiwan and to solidify our relationship with TFRD and TiPAH.
Scleroderma Foundation
PHA attended the Scleroderma Foundation Conference in Philadelphia, Penn. in July. The conference attracted almost 450 attendees. PHA had a popular booth where we distributed educational materials and spoke with Scleroderma Support Group Leaders about the upcoming PH Medical Education Sessions, where the Scleroderma Foundation is partnering with PHA to present info about scleroderma and PH at the patient sessions. People requested so much info from our booth we didn't have any materials left at the end of the conference!
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