Saturday, August 31, 2013

Canadian PH Teen & One Direction Super Fan Gets New Lungs, But Misses Concert

Thirteen-year-old Amanda Kakoz is the proud owner of a new set of lungs after undergoing a double-lung transplant in July. Unfortunately, her hospitalization coincided with the One Direction concert she had been waiting two years for. Amanda had more luck with getting her lungs and only had to wait a month. The Trillium Gift of Life Network (TGLN) in Canada reports that 23 percent of Canadians are registered as donors, well below the registration rate of 45 percent in the U.S.

We can do better in both countries. Spread the word and be sure you are an organ donor.

Read more about Amanda's story | Canadians: become an organ donor | Americans: become an organ donor | Read about pulmonary hypertension and transplantation

Friday, August 30, 2013

PHA Offices Closed Monday for the Holiday

Pulmonary Hypertension Association offices will be closed Monday, Sept. 2, for the Labor Day holiday.

Share of the Week: Allied Health Professional Symposium

PHA's PH Professional Network is holding their biennial Symposium in the Washington, D.C. area Sept. 26-28. Symposium goes beyond nursing care with tracks on pharmacy, respiratory therapy, social work and pediatrics. Urge the allied healthcare professionals who treat you to attend Symposium to ensure that the latest advances in the care and treatment of pulmonary hypertension are incorporated into the care you receive.

Send the allied healthcare professionals who treat you to www.PHAssociation.org/PHPN/Symposium today!

Thursday, August 29, 2013

Kit for Newly Diagnosed Now Downloadable

It’s still free, but now it’s downloadable too! Our Envelope of Hope is a free information kit designed especially for patients and families who are new to pulmonary hypertension. This packet will give you a brief and easy-to-understand overview of PH and the services PHA offers to help you plan your next steps.

Download or order your Envelope of Hope today

Make Your Media Pitch Irresistible to Reporters

Make your media pitch irresistible to reporters this Awareness Month! Reporters sift through dozens of pitch ideas every day, so why not include a video the next time you email a reporter your pitch? Include a link to one of these public service announcements to make sure your pitch stands out from the others.

View and share PSAs

PH Fact: PHA Support Line Not Just a Hotline

Call PHA's Support Line to:
  1. Talk to another patient right away
  2. Ask questions and get tips about living with PH
  3. Find a local doctor
  4. Vent!
  5. Find a local support group
  6. Get feedback from a long-term survivor
  7. Learn more about PHA
  8. Learn how you can get involved with PHA
Call 911 for emergencies, and for anything else, call on us!

1-800-748-7274

Wednesday, August 28, 2013

PHA Resource Highlight: Patient’s Survival Guide

Did you get your copy of the updated Pulmonary Hypertension: A Patient’s Survival Guide yet? The Survival Guide is a resource book for PH patients and their families covering a wide variety of topics and issues patients face every day. PHA recently released the 2013 Revision to the 5th Edition of the Survival Guide with eight fully updated chapters. The Survival Guide helps everyone from new patients trying to understand and cope with their diagnosis to decade’s long PH survivors who want to be up-to-date with the latest information. Families and friends can benefit too with a full chapter devoted to caregivers.

The Survival Guide is available to PHA members at a 40% discount. Order your copy of the Survival Guide today

Not a member or not sure if your membership is up-to-date? You can check your membership status online or contact Membership@PHAssociation.org then join or renew your membership.

Advocate for Pulmonary Hypertension Research

Want to know more about legislation that will improve life for the PH community? Subscribe to PHA’s monthly Advocacy Action Alerts, and you’ll be the first to know what Congress is doing about pulmonary hypertension. You’ll also receive tips you can use to get your elected officials to support PH research.

Subscribe to Advocacy Action Alerts

Tuesday, August 27, 2013

PH & Scleroderma Webinar Thursday

Join the Scleroderma Foundation and the American Thoracic Society Public Advisory Roundtable for a webinar this Thursday at 3 p.m. ET on "Systemic Sclerosis: Interstitial Lung Disease and Pulmonary Hypertension."

Register now

Reminder: How-to Webinar on Hosting a Unity Miles Event Tomorrow

Join us tomorrow for a LIVE webinar at 3 p.m. ET/noon PT to learn about hosting a Unity Miles event in support of Race of Our Lives! Other fundraising opportunities include sponsoring a mile or starting a personal fundraising page.

Register now

Question of the Week: Exercise

Question of the Week: What is the most common way you exercise? Please share in the comments below.

Monday, August 26, 2013

Spread the News about Team PHenomenal Hope

Tell friends and colleagues inside and outside the pulmonary hypertension community about Team PHenomenal Hope and their endurance cross-country bike race in honor of PHA. Share this dynamic 30-second video spot that will leave them eager to learn more.

Share team video

Caregivers Honored by PH Patients

“Along with the fine doctors at Mt. Sinai Hospital, the Pulmonary Research Center and the [local PH] Support Group, I owe my life to all of them, especially John, my caregiver, for looking after me and doing all the things he does. I thank God every day and realize that love can still survive in spite of many difficulties.”
– Carolyn, honoring her husband and caregiver John

Read more Caregiver Shout-Outs

Have PH and Scleroderma? Find Events

Check out the Scleroderma Foundation's calendar of events for a support group meeting in your area or other fun activities and events.

View calendar

Sunday, August 25, 2013

Saturday, August 24, 2013

Sean Wyman Earns Degrees Despite Doctors' Prognosis

When diagnosed with pulmonary hypertension at the age of 18, Sean Wyman was told he would never be able to work or go to school. Today, Sean has a bachelor's in psychology and a masters in medical science. He is also an active member of the PHA community.

Read his story in his school news | Join Generation Hope

Friday, August 23, 2013

Entrevistas del Día Latino de HP 2012

¿Has visto esta serie de entrevistas con líderes en la comunidad latina de hipertensión pulmonar? Estos fueron grabados durante la Cumbre de Líderes Latinos 2012 que se celebró en Costa Rica por parte de la Sociedad Latina de HP.

Unite Your Community in Support of the Race of Our Lives

Organizing a Unity Miles event is a great way for you and your community to support the Race of Our Lives campaign. Unity Miles events don't need to be a bike ride, just a way of gathering together with your local community in support of the Race in order to raise awareness and funds for the cause.

Throughout the process, PHA will be by your side with support and resources, including some cool campaign gear. Along the way you can earn perks, such as listing of your event on the Sponsor a Mile map. So grab your friends and family and let's walk, roll and move towards a cure!

Interested in hosting a Unity Miles event? Join us for a LIVE webinar on Aug. 28 at 3 p.m. ET/noon PT to hear from PHA’s Special Events staff and event organizer, Merle Reeseman, with a step-by-step guide to hosting a Unity Miles event! Register now

Even without hosting an event, you can still support the Race of Our Lives campaign by sponsoring a mile or starting a virtual fundraising page. Learn more about fundraising opportunities at www.PHAssociation.org/RaceOfOurLives.

Thursday, August 22, 2013

Provide Feedback on Organ Transplant Procedures

The Organ Procurement and Transplantation Network (OPTN), to which all organizations that handle organs or conduct transplants must belong, is revising its policies. The main goal of the revisions is to make the policies easier to read and understand. OPTN is making a draft of the new policies available for feedback until Sept. 9.

Review the policies and let OPTN know if they are easy to understand

Question of the Week: Moving


Question of the Week: Have you ever moved? Do you have any tips on moving for someone living with pulmonary hypertension? Share your tips below in comments.

Wednesday, August 21, 2013

Reminder: Patient Telephone Support Meeting Tomorrow

Join us for our monthly patient telephone support group call tomorrow at 8 p.m. ET/5 p.m. PT.

Register now

Don't Waste Time

Don’t wait! Making a donation to PHA’s research programs today will lead to change in the PH community tomorrow. Our research programs are dedicated to finding a cure by expanding our community’s knowledge of PH.

PHA needs your help today

Tuesday, August 20, 2013

Meet PHriends at PHA Canada's Conference in September

Attention U.S. and Canadian PHriends! Looking to meet others dealing with pulmonary hypertension? We are one month away from PHA Canada’s 3rd National PH Conference, Keeping the PHlame of Hope Alive. It’s not too late to sign up online for the Sept 20- 22 weekend Conference in Ottawa.

Learn more and register

Faces of PH: Joanne Sperando-Schmidt

“We have to take responsibility to move research forward. By hosting a fundraiser each year, I have a hand in progress by raising money to support researchers in finding a cure.”

Read more about Joanne’s event | Support research for a cure

Introducing the Race of Our Lives Campaign

Seven incredible women including a PH physician will compete in the cycling race of their lives next June in honor of PHA. Visit this new website to get the scoop on the team, the race and PHA’s Race of Our Lives campaign to involve you in the excitement: www.PHAssociation.org/RaceOfOurLives

And bring your questions for the team to our webinar tonight (Tues.) at 8 p.m. ET/5 p.m. PT.

Monday, August 19, 2013

Meet Team PHenomenal Hope Tomorrow!

Don't miss out! Register now for the Q&A session with Team PHenomenal Hope tomorrow, Aug. 20, at 8 p.m. ET/5 p.m. PT. This group of incredible women will be put to the test as they compete in the Race Across America (RAAM), taking them across 3,000 miles and 170,000 vertical feet of elevation in just 9 days. The team is racing to raise awareness of pulmonary hypertension and funds to support PHA programs and research to find a cure.

Check out our team video on YouTube (4.5 min.) then register for the Q&A webinar.

Upcoming CTEPH Webinar on Aug. 27

Chronic Thromboembolic Pulmonary Hypertension – What You Need to Know
Tuesday, August 27, 2013
2:00 PM EST

Learn about Chronic Thromboembolic Pulmonary Hypertension (CTEPH) from two unique perspectives. Richard Channick, MD from Massachusetts General Hospital will provide an overview of the disease and available treatments. Amanda Harvey-McKee, a former CTEPH patient, will discuss her experience living with CTEPH and the changes in her life since undergoing a pulmonary thromboendarterectomy (PTE).

Register now

PH Fact: Number of Pulmonary Hypertension Treatments & Cures


Twenty years ago there were no pulmonary hypertension treatments available. Through focused research there are now nine PH-specific treatments with more in development. But we know that your ultimate wish is for a cure, and that is why PHA will continue to support the work of researchers until the day when no one suffers from PH. Donate to PHA's research appeal

Sunday, August 18, 2013

Mother Who Nearly Died Giving Birth Raises Awarenes of Pulmonary Hypertension

Hollie Sassienie, a 32-year-old mother living in the U.K., was diagnosed with pulmonary hypertension when she was about to give birth. After she gave birth she spent ten days in the intensive care unit fighting for her life. She now wants to use her experience to help others.

Read article | Read more about PH and family planning

Saturday, August 17, 2013

Sickle Cell Disease Convention Coming Up In September

Have sickle cell disease and pulmonary hypertension? The Sickle Cell Disease Association of America is holding their annual convention the end of September. Learn more and register

Sickle cell disease (SCD), a type of anemia (shortage of red blood cells), is characterized by abnormally shaped red blood cells. Sickle cells (named for the sickle, or oblong, slender shape of the malformed blood cells) have decreased flexibility, meaning they break easily. This results in a number of life-long complications.

Pulmonary hypertension is an increasingly recognized complication of SCD. Studies show that approximately 30% of screened adult patients with SCD develop mild PH in adulthood. In 10% of patients, the PH is more severe.

Learn more about sickle cell disease and pulmonary hypertension

Demystifying FDA: An Exploration of Drug Development

The Food and Drug Administration (FDA) is holding their annual patient meeting on Sept. 10 in Washington, D.C. The event will also be webcast. Here is what the FDA says will be discussed:

"The meeting will serve as a forum for FDA’s patient stakeholders and the general public, including health professionals, academia, and industry to learn about regulatory issues related to drug development, analyze where in the process patient input may be most practical and most valuable, and explore practicable approaches to incorporating meaningful patient input that will represent broad patient perspectives in medical product development and regulatory decision-making. Specifically, this meeting will provide information and facilitate a discussion about: drug development and regulatory standards, clinical trial design, new regulatory tools for improving pre-market drug regulation, and industry-FDA-patient collaboration for innovative drug development."

Register for the in-person meeting or webcast

Friday, August 16, 2013

Actress Linda Dano Shares Story on Overcoming Depression

Actress Linda Dano shares her story of fighting through and eventually overcoming clinical depression. She shares tips that anyone can incorporate into their own struggles with emotional health.

Read her story

Cruising with a Disability - PH Patient Isabel Visits Canada

by pulmonary hypertension patient Isabel Best from Belmont, Mass.

Anne of Green Gables House,
Prince Edward Island, Canada
We went on a seven-day cruise to the Canadian Maritime provinces. I am on oxygen and took my Inogen One and a folding wheelchair. There were other passengers using wheelchairs -- very helpful for long distances on board and excursions ashore, and people were always willing to help us get the wheels over a hump. We had a semi-accessible stateroom with grab bars in the shower.

I didn't meet anyone else with PH, and had several opportunities to explain it to people. Those of us living with disabilities were an encouragement to one another. A cruise is a good holiday for us, because one can choose which activities to participate in (even "swimming"!) and then snooze afterward while one's caregiver explores the ship. My husband especially enjoyed the delicious meals that he did not have to cook himself, and we both loved the international atmosphere, and being transported to another world -- so beautiful.

Visit our e-Learning Guide on traveling with pulmonary hypertension

Be Part of the Buzz about Team PHenomenal Hope

Seven incredible women from Pittsburgh passionate about cycling and about raising awareness and funds for PHA have formed Team PH to compete in a high endurance race in honor of PHA. Learn about these cyclists and their ambitious Race Across America (RAAM) planned for 2014 in a brand new YouTube video posted today! Watch the video (4.5 min)

When you see this dynamic video, we think you’ll want to get to know the the team members. So plan to greet them on a webinar, “That’s How We Roll: A Interactive Conversation with the Cyclists of PHA’s Team PHenomenal Hope” Aug. 20, 8 p.m. E.T./5 p.m. P.T. Ask your questions about the race they will take on next June and how their cycling challenge mirrors the challenges of daily life with pulmonary hypertension. Register now

I NEVER Thought I Could Do This, but I Did!

Noël Holly, a pulmonary hypertension patient, talking about her very first district visit with Rep. Dana Rohrabacher (R-CA) 

Recently the PHA website had a video about contacting your Congress person about the new Pulmonary Hypertension Research and Diagnosis Act. I thought... "Hmmm - why not give this a try?"

With heart beating a little faster even for a PH patient, I put on my "professional clothes" and, armed with information about PH and the 2013 Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073), I went to see my congressman - Dana Rohrabacher (R-CA-48) (pictured right with Noël) - to tell him about PH and more specifically the new Pulmonary Hypertension Research and Diagnosis Act and to ask him to become a co-sponsor.

Congressman Rohrabacher and his health legislative assistant listened and asked questions. He explained his position of not co-sponsoring any health related issues, and I was able (amazingly enough) to reply with some facts that will perhaps change his mind and to read the material that I brought.

I learned several things from this visit. One: that I, who would have NEVER thought that I could do something like this, actually could! Two: that research and preparation are critical. To that end, I must thank PHA and their website with such excellent tools to help me find information about the bill and more importantly about my congressman and any history that he might have had with previous bills for pulmonary hypertension.

I also am so grateful for Diane Ramirez, who - via Facebook- learned of my planned visit and contacted me to give me her expertise and advice.

I don't know yet if my congressman will actually cosponsor the bill, but I plan on following up, and with persistence will see him do so.

Email your Member of Congress about the PH bill | Visit our resources for scheduling a visit

Thursday, August 15, 2013

Chicagoland PHers – We’re Walking for a Cure

Join PHA’s Midwest Chapter and the Chicagoland area PH community for our O2 breathe Chicago Walk on Saturday, Sept. 22 at Twin Lakes in Palatine, Ill. Gather your friends and family to form a team in support of the PH patient in your life. Your team can create custom T-shirts and signs and raise funds for much needed PH research and programs.

Can’t attend? You can still participate by becoming a virtual walker and raising awareness and funds for the cause.

Learn more and register

Coping Over Time


Learning more about coping with pulmonary hypertension over the long term

Wednesday, August 14, 2013

Telephone Support Group Call for Patients Aug. 22

Connect with other patients from across the United States monthly on PHA's Patient Telephone Support Group meetings. The next meeting will take place on August 22 at 8 p.m. ET/5 p.m. PT.

Register

Tuesday, August 13, 2013

Caregiver Support Group Call Coming Up

Caregivers of adult PHers – have a question for other caregivers? Get other caregivers’ input during next week’s Caregivers Telephone Support Group!

Learn more

Support PHA in Finding A Cure

“Compared to other diseases such as cancer and stroke, PH receives less attention and therefore, the work of PHA to support research is critical to improve outcomes for patients.”

Dr. Peter Oishi, MD has received a research award from PHA and he knows firsthand the significant role members of the PH community play when they give to PHA research.

When you give, rest assured that 100% of your donation will go directly towards advancing PH research and growing our community’s knowledge of PH.

Donate today to research dedicated to find a cure

A New Addition to PHA Classroom: e-Learning Guides



Expand your PH knowledge! Check out a new addition to PHA Classroom – e-Learning Guides!


These guides are a simple, easy-to-use source of tips and tricks for living with PH.


Monday, August 12, 2013

Thursday, August 8, 2013

Colleen Connor Is At It Again

In April Colleen Connor held one of PHA's most successful fundraisers ever by raising more than $200,000 at her inaugural Philadelphia's Hope for a Cure Gala. Now she is raising awareness in the media with a feature on her in her local paper.

Read the article | Read more about her gala in April

PHA President on New Drug for PAH & CTEPH

PHA President on New Drug for PAH & CTEPH PHA's President Rino Aldrighetti was at the meeting earlier this week where a FDA committee reviewed a possible new drug for pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). Read Rino's blog for a front row seat 

The 2013 PH Professional Network Symposium Is Near

Medical professionals: The 2013 PH Professional Network Symposium is right around the corner – Sept. 26-28, in Arlington, Va. This is a unique educational and networking experience that allows you to learn from, and with, your PH-treating colleagues. Discounted registration is available for the first 250 PH-treating healthcare professionals who register. Don’t delay – this special pricing is going quickly!

Register now

Upcoming Aug. 15 Webinar on Exercise Induced Pulmonary Hypertension

Exercise-Induced Pulmonary Hypertension – What Is It and What Do We Do About It?
Thursday, August 15, 2013
1:00 pm EST
Presenter: Abraham Samuel Babu, FCR, MPT

This webinar will discuss the importance of assessing for exercise induced pulmonary hypertension (EiPH), especially in those at risk for pulmonary hypertension. Abraham Babu, a physical therapist from Manipal University in Manipal, India, will speak to the current theories and practices used to treat EiPH.

Register now

Wednesday, August 7, 2013

Breaking News! FDA Committee Recommends Approval of New Oral PH Drug Riociguat

A committee within the U.S. Food and Drug Administration (FDA) unanimously recommended approval of the drug riociguat to treat two kinds of pulmonary hypertension. The Cardiovascular and Renal Drugs Advisory Committee voted 11 to 0 that the FDA should approve riociguat. Bayer HealthCare developed the drug, which if approved, would be sold under the trade name Adempas.

The proposed drug, taken in pill form, would be used to treat pulmonary arterial hypertension (PAH). It would also be used to treat patients with chronic thromboembolic pulmonary hypertension (CTEPH) who cannot undergo a pulmonary endarterectomy surgery to remove clots in their lungs, or for those who still have complications after having the procedure.

PHA president Rino Aldrighetti wrote a letter to the FDA in advance of the committee’s hearing urging the agency to approve riociguat if they found it to be safe, effective and a great need for it. “While there have been great advances in research and expanded treatment options for pulmonary arterial hypertension in recent years, I want to assure you that it is not enough,” he writes. “We continue to lose too many patients with this disease.” He added: “The need is there for PH where it will be a valuable addition in the arsenal of therapies.”

In an op-ed piece for the New England Journal of Medicine, Stephen Archer, MD, notes that the study results were somewhat modest. CTEPH patients still had better results undergoing surgery than they did taking riociguat. “Patients who are suitable candidates for surgery should continue to undergo surgery and not be relegated to an inferior treatment,” writes Dr. Archer.

In the study that focuses on PAH patients, Archer observes that only 21 percent of patients who took the drug in the trial saw a functional improvement, which is not too different from other pills that treat PAH.

“However, I view the glass as half full, because riociguat appears to be safe and is a promising addition to the pharmacopeia for [PAH and CTEPH patients],” Dr. Archer says.


Question of the Week


Help Find A Cure

By making a donation to PHA’s research programs, you are adding to $12.5 million already committed to funding innovative PH research by other members of the community like yourself.

Not only that, but your donation to PHA’s research program is multiplied through PHA’s close partnerships with renowned research organizations like the National Heart Lung and Blood Institute (NHLBI), a branch of NIH.

Learn more and make a donation to PHA’s research program today 

Tuesday, August 6, 2013

PH Patient Bikes Across Iowa


Riders make their uphill ascent on day 2  of RAGBRAI. 
The 83-mile trek from Harlin to Perry, Iowa, 
was the longest stretch on this seven-day journey.
Kathy Morton has endured ups and downs living with PH, but that hasn’t kept her from taking on some tough challenges. “Sometimes what appears to be really big hills don't turn out to be that bad. Other times, hills that appeared small turned into the biggest obstacles,” she says.

Kathy is talking about the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI), a weeklong bike ride she completed this July. RAGBRAI is the oldest, largest and longest bicycle touring event in the world. The whole journey was 406.6 miles, with overnight stops in designated towns across the state. Kathy averaged just under 60 miles a day on the journey, braving steep inclines, headwinds and the summer heat.

She made sure to pace herself and drink a lot of water throughout the trip. If it got too hot, she would stop to cool down. Kathy, along with many other riders, chose to walk, rather than bike, up some of the particularly steep hills. “If you need to stop and catch your breath it's OK,” Kathy says. “You don't have to prove anything to the world. All that matters is that you know you are doing your best.”
Kathy Morton (center) dips her bike in tires in the Mississippi
River, marking the finish line in Fort Madison, Iowa. Along
with Arek Wdowiak (left) and Michelle Eggert, the trio
was among thousands of cyclists from around the world
who participated in RAGBRAI.

Kathy, who now lives in Peoria, Ill., is proud to call herself an Iowan, having grown up in the Hawkeye State. As a child, the RAGBRAI route stopped in her hometown of Ames several times and she got to see the riders in person — it’s an experience that always meant a lot to Kathy.


Now that this great bike ride is over, she is already contemplating the next adventure, be it a trip to Japan or biking through wineries in Spain. “There is hope,” Kathy says. “PH doesn’t mean the end of your life.”


Read Kathy’s diagnosis story

Learn more about RAGBRAI



By Ellie Falaris Ganelin
Design & Publications Manager, PHA

American Medical Association Supports the Pulmonary Hypertension Research and Diagnosis Act

Shout out to the American Medical Association for their support of the Pulmonary Hypertension Research and Diagnosis Act!

The AMA’s letter to Rep. Kevin Brady (R-TX), the House sponsor of the PH bill, said: "We appreciate your leadership on behalf of those with pulmonary hypertension and look forward to working with you to advance this legislation. Show your support for the bill by emailing your Representative and asking them to co-sponsor."


Monday, August 5, 2013

Fall PHA Internships Available Still

Looking for a rewarding internship this fall, or know a student who is?  Apply to be an intern at PHA this fall!  Transportation subsidy and flexible hours available!

Read a list of available internships and descriptions 




Faces of PH: Shiela Bostelman


Faces of PH: "It blows me away. I get paid to play with kids every day, and I love it. These kids have given so much back to me. I see so much more hopefulness in these patients that I never saw as a cardiology staff nurse. Don’t lose that hope."

---Shiela Bostelman

Read the rest of Shiela’s story

Sunday, August 4, 2013

2nd Annual PGH-PH Walking PHor a Cure


Let’s start Walking PHor a Cure and cover the miles of the country together at the UNITY MILES KICKOFF EVENT in Pittsburgh, PA on Sunday, Aug. 11 at the Beveridge Shelter in North Park McCandless Township, PA!


Saturday, August 3, 2013

PHA’s 2014 International PH Conference and Scientific Sessions Survey


Are you ready for PHA’s 2014 International PH Conference and Scientific Sessions? Do you want to share your opinion on potential sessions?

Take our survey and let us know

CTEPH Survey and Resources

Do you or does someone you care about have CTEPH? Would you be interested in taking our short survey to help us learn more and create more targeted resources to help address concerns of those who have CTEPH?

To learn more about CTEPH 

Friday, August 2, 2013

People Stylewatch Magazine to Donate Portion of Proceeds to PHA

Ladies: be at the height of fashion while you support the Pulmonary Hypertension Association.

Gentlemen: support the cause while treating your girlfriend, wife or sister to a bag she'll be grateful for!

This month’s People Stylewatch magazine features a shiny gold “mirror” tote bag whose manufacturer, Galian, will donate a portion of proceeds to PHA on bags ordered at Galian by Aug. 16. Get a discount on the bag by typing in PEOPLESTYLE20 at online checkout. 



PH Fact/Resource: Chronic Thromboembolic Pulmonary Hypertension

Learn more about chronic thromboembolic pulmonary hypertension (CTEPH)

Thursday, August 1, 2013

Throwback Thursday: 2010 PHA International PH Conference Video

For #ThrowbackThursday PHA is looking back at the 2010 International PH Conference from June 2010 in Garden Grove, CA. Look back on a past event from the 2010 International PH Conference.



PHA’s next International PH Conference will be held on June 20-22, 2014. Registration opens in January 2014.  The conference will be held at JW Marriott Indianapolis.


Conference Highlights:

  • Opportunities to network with other PH community members.
  • Education sessions for patients and family members led by expert medical professionals and members of the community.
  • Dedicated education for medical professionals including a day-long Scientific Sessions, additional Fundamentals of PH sessions and poster presentations.

We hope to see you at PHA’s 2014 International PH Conference and Scientific Sessions!

Make a Difference


What if you could shape a brighter future for tens of thousands of patients battling PH? You can.

Your donation to PHA’s research program contributes directly to the knowledge that brings us closer to a cure for pulmonary hypertension.

Learn more about PHA’s research program and make your donation today