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PHA News Archive - August 12, 2005

 vol 6, Number 18

PHA News August 12 , 2005 
PHA News is an e-mail newsletter from the Pulmonary Hypertension Association covering PH related topics.

PHA News editor - Sally Maddox skmaddox@bellsouth.net
reaching over 5000 subscribers

www.phassociation.org


PH Patient's Legacy now available online

About the creation of Artery
by Mike Furbee

Artery artwork by PH patient

After Mary died, several people had talked about how I should do a book of her paintings. I had started out thinking I would just do a limited edition set of boxed prints, but costs were exorbitant unless I only wanted to print about 20 sets, which clearly wasn't enough.

...At first I thought a paperback book would be enough, and then I worried about the quality of the prints, and I didn't think anyone would respect her artwork if I did it as a paperback....read rest of story...

order book/DVD set


Topics For This Issue
North Carolina man going strong 20 years after rare, risky surgery
Myogen Announces Publication of Ambrisentan Data in Two Scientific Journals
Actelion: Second Study with bosentan (Tracleer) Demonstrating a Statistically Significant Reduction of New Digital Ulcers in Patients with Systemic Sclerosis

North Carolina man going strong 20 years after rare, risky surgery

Vann Matthews has lived longer than almost anyone with a transplanted heart and lung, and as remarkable as that is, so is his wife's devotion.

Alice stood by her man.

They were college sweethearts when Vann was diagnosed in 1981 with a rare and incurable disorder that wears out the lungs and the heart. A double-transplant was his only hope.

Until then, there had been only one heart-lung transplant. Ever. Not only was the operation risky, there was no national clearinghouse for organs, so donors were hard to find.

Read story
http://www.fortwayne.com/mld/
newssentinel/living/12311422.htm

Myogen Announces Publication of Ambrisentan Data in Two Scientific Journals

DENVER, Aug. 11 /PRNewswire-FirstCall/ -- Myogen, Inc. (Nasdaq: MYOG - News), a biopharmaceutical company focused on the discovery, development and commercialization of small molecule therapeutics for the treatment of cardiovascular disorders, today announced the publication of the results from a Phase 2 trial of ambrisentan in patients with pulmonary arterial hypertension (PAH) in this month's issue of the Journal of the American College of Cardiology. In addition, this month's issue of Future Cardiology contains a review article describing the potential of ambrisentan as a new treatment for patients with PAH.

Read Article
(http://biz.yahoo.com/prnews/050811/lath089.html?.v=22)

Learn about PH

Survival GuidePulmonary Hypertension - A Patient's Survival Guide
The premiere information resource for people dealing with PH -- they have ARRIVED and are ready to ship!!!

The author, a PH patient herself, knows what it is like to live with the disease. She talked to many other patients, doctors, and researchers while writing the Survival Guide. Dr. Ronald J. Oudiz and a team of physicians with a deep knowledge of PH edited the book for accuracy.

New edition contains a chart of 15 drugs used to treat PH; results of recent clinical trials; in-depth discussion of PH secondary to other diseases or conditions; a new chapter on what to eat if you have PH; and much, much more!

Actelion: Second Study with bosentan (Tracleer) Demonstrating a Statistically Significant Reduction of New Digital Ulcers in Patients with Systemic Sclerosis

ALLSCHWIL, Switzerland, Aug. 9, 2005 (PRIMEZONE) -- Actelion Ltd (Other OTC:ALIOF) (SWX: ATLN) announced today the preliminary result of a double-blind, placebo-controlled, randomized, multi-center, 190-patient Phase III study, RAPIDS-2, with the dual endothelin receptor antagonist bosentan (Tracleer(R)) in systemic sclerosis patients suffering from digital ulceration.

Read Article
(http://press.arrivenet.com/bus/article.php/679554.html)

PHA Regional Medical and
Patient Education Sessions

Medical Education - Shining the Light 
Shedding Light on
Pulmonary Arterial Hypertension:
The Journey Toward a Brighter Future

More info at: www.phassociation.org/medicaleducation/

For Medical Professionals:
With the advent of new PH drugs and treatments, more and more doctors are becoming increasingly involved in the PH community. PHA has responded to this, and will bring together world-renowned leading PH specialists to lead Medical Education Sessions for their peers during the fall in six cities: New York; Atlanta; Chicago; Seattle; Dallas; and Washington, DC

Physicians who participate are eligible to receive CME credits. Educational credits will also be available for nurses and pharmacists.
 

YOU MUST REGISTER and SPACES WILL FILL UP!

Register online at www.phassociation.org/
medicaleducation/regis.asp

For more information on courses, specific dates, locations, and a preliminary schedule, visit www.phassociation.org/
medicaleducation
.

For questions or to register by phone, please call 858-717-2940.

 

For Patients:
While we are bringing together leading specialists and interested medical professionals for the Medical Education Sessions, we know that patients will also greatly benefit from these gatherings. We are therefore very excited to announce PHA's Regional Patient Education Sessions.
Many of the medical professionals presenting earlier during the day will stay for the evening's PHA Regional Patient Education Session to participate in a dinner, educational slide-show and panel discussion of current advances in PH. Kim Bernstein, director of ACCESS, will also be at each session, presenting on insurance issues and how to use her program as an important resource.

Partnering with Actelion and Accredo Therapeutics we are able to allow a free ticket to each patient and one guest (a 50 dollar value), up to the first 200 registrants. This includes dinner and the presentations. Any additional guests or registrations after the first 200, will need to purchase a ticket at $25. PH patients with Scleroderma are also invited to attend a Scleroderma Support Group meeting taking place earlier in the day.

PHA thanks Actelion, our primary sponsor, and Accredo Therapeutics for their generous support of this program.


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