“This event brings so much hope and awareness to our community,” said Rino Aldrighetti, PHA President and CEO. “Our patient and caregiver sessions are informative and inspiring and our medical education sessions shed light on improving treatment options."
Silver Spring, Md. (PRWEB) June 17, 2014
Pulmonary Hypertension Association (PHA), the nation’s leading pulmonary hypertension organization, is meeting in Indianapolis, Ind., June 20-22 to educate, foster networking and bring hope to patients, caregivers and medical professionals working to live with and find a cure for pulmonary hypertension.
Pulmonary hypertension is a disease of the lungs that affects the functioning of the heart and can lead to heart failure. Without treatment, mean survivability is only 2.8 years. PHA’s mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. PHA also facilitates more than 245 support groups around the country – including a group in Indianapolis – and delivers continuing education for medical professionals.
This year will mark PHA’s 11th Biennial Conference and will bring together more than 1,500 people from the PH community from all over the globe. Because PH is a rare disease, this gathering is often times the first time patients and caregivers meet other people going through the same journey. Medical professionals also take part in this event and relate first-hand with those suffering from the disease. This makes the conference a truly life changing experience for its attendees and, most importantly, gives them hope.
“This event brings so much hope and awareness to our community,” said Rino Aldrighetti, PHA President and CEO. “Our patient and caregiver sessions are informative and inspiring and our medical education sessions shed light on improving treatment options and furthering research in the field. We truly race for a cure every day a patient lives with this debilitating disease.”
The pulmonary hypertension community is very excited about the progress research is making in fighting the disease. While the first treatment was not approved until 1996, eleven treatments have been approved since 2001, three of those in the 4th quarter of 2013. There are now as many or more treatments than all but two of the 7,000 identified rare diseases.
Local pulmonologist, Tim Lahm, MD, has worked tirelessly over the past year with local medical colleagues to ensure that patients attending PHA’s Conference have a safe and healthy experience in Indianapolis. Dr. Lahm is an assistant professor of medicine at Indiana University and a practicing pulmonologist specializing in pulmonary hypertension in Indianapolis. Dr. Lahm sees patients at the Pulmonary Hypertension Clinic at Richard Roudebush VA Medical Center and has been heavily involved with the Pulmonary Hypertension Association.
PHA’s Conference will include scientific and poster sessions, patient and medically led sessions, an exhibit hall and a research room used to gather information from patients for research and further study about the disease.
Global PH Leaders Gather at Conference
JW Marriott Indianapolis / Grand Ballroom 3-4/ Thursday, June 19
PHA has helped to grow the global PH community from three PH associations in 2000 to 68 today. Leaders from 26 of those associations will be meeting and connecting for the Global PH Leaders’ Summit.
Going All Out in the Race Toward a Cure
JW Marriott Indianapolis / Grand Ballroom 5-6 / Friday, June 20
Dr. Patty George is racing with the women of Team PHenomenal Hope with the Race Across America, culminating a year of raising PH awareness and funds for PHA. We will celebrate the challenges and rewards of the journeys we take together as a community by honoring the work of Dr. George and putting the spotlight on Jeannette Morrill, a patient who has been in the race toward a cure for more than 38 years.
Scientific Sessions (Including Oral Abstract Presentation Winners)
JW Marriott Indianapolis / Grand Ballroom 7-10 / Friday, June 20 / 8 a.m. – 5:30 p.m.
Unopposed Poster Viewing
JW Marriott Indianapolis / Griffin Hall 2nd Floor / Friday, June 20 / 5:30 p.m. – 6:45 p.m.
JW Marriott Indianapolis / Room 201-202 / June 20-22
Each PHA Conference includes a research room dedicated to helping researchers further their studies by allowing for the collection of data, including biological specimens (cheek swabs and blood samples) from PH patients. This gives researchers the rare opportunity to collect data from the largest gathering of pulmonary hypertension patients in the world at any given time. The blood draw at the first Conference in 1994 led to the discovery of the PH gene. This year, 10 research projects will participate in the Research Room. Learn more about the research room here.
For more information on PHA, pulmonary hypertension and this year’s conference go to http://www.PHAssociation.org. Members of the media looking for comment or story ideas, contact Renée Hockaday at 240-485-0774 at ReneeH(at)PHAssociation(dot)org.
PHA has developed a series of public service announcements focused on PH research and early diagnosis. These PSAs were sent out to radio and television stations across the country. To learn more about the PSA campaign or to find a PH patient or doctor in your area, contact Renée Hockaday at ReneeH(at)PHAssociation(dot)org or 240-485-0774.
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Renée W. Hockaday