Friday, February 28, 2014

Eat at Temecula Pizza Factory and Support PHA

Valley News: When Kori Siroky, a Temecula resident, was told by doctors that her daughter Lilly Detillion-Siroky, 7, was diagnosed with a rare heart condition called pulmonary hypertension in 2007, she said it was like the scene out of a movie. "Everything was so dizzy, everything shutdown, and I couldn’t hear anything," Siroky recalled. "I was scared. I didn’t know what it was." Help bring awareness to pulmonary hypertension and to raise money for the Pulmonary Hypertension Association, a fundraiser will take place at Pizza Factory on Wednesday, March 5. Twenty percent of the orders will be donated to PHA.

Read Kori and Lilly’s full story

With PHA Classroom's e-Learning Guides, accessing information about pulmonary hypertension has never been easier. These guides bring together recordings and other useful PHA resources that cover a variety of popular topics. Simply choose from a topic that interests you and continue your learning today!

Today is Rare Disease Day

It's not too late to unite with the other 30 million Americans who are living with a rare disease to activate our numbers in support of change. Share your Handprints Across America photo and your story on Facebook and other social media, link to the Rare Disease Day site, and sign up for our alerts to be at the ready to take action in support of pulmonary hypertension and other rare disease issues. Help spread the message that having a rare disease is not rare.

Thursday, February 27, 2014

PH Care Centers Pilot Site Review Begins


Yesterday, the PHA PH Care Centers (PHCC) accreditation program conducted the first pilot site review at the Inova Fairfax Hospital Pulmonary Hypertension Program. Led by PHCC reviewers Abby Poms, RRT, RCP and Joel Wirth, MD, the site review began by meeting with the PH program co-directors: Steven Nathan, MD, and Oksana Shlobin, MD. During this one day site review, the PH program structure and facilities were evaluated and various staff and administrators were interviewed. Inova's PH program is the first of six sites to pilot the PH Care Centers accreditation program.

The PH Care Centers initiative was developed through the efforts of many clinicians, researchers and PHA staff who dedicated the past two years to help advance the field of PH through this initiative. By creating an accreditation program for PH programs, patients with pulmonary hypertension will be able to identify PH Care Centers that are providing high levels of care in order to effectively treat and manage this rare disease.

In the coming months, more information about the PHCC initiative will be disseminated through webinars and blog posts. For sites interested in PH Care Centers accreditation, you can the view the criteria and application process online, while resources for PH patients can be found on the PHCC Patient page. For any questions or updates about the PHCC initiative, please contact Medical@PHAssociation.org.

From left to right: PHCC Reviewer Joel Wirth, MD; PHCC Program Manager Olivia Onyeador, MHA; Inova Fairfax PH Program Co-director Oksana Shlobin, MD, FCCP; PHCC Reviewer Abby Poms, RRT, RCP; and Inova Fairfax PH Program Co-director Steven Nathan, MD, FCCP.
From left to right: Inova Fairfax PH Program Co-director Steven Nathan, MD, FCCP; Inova Fairfax PH Program Co-director Oksana Shlobin, MD, FCCP; and PHCC Reviewer Joel Wirth, MD.

Team PHenomenal Hope News

Team PHenomenal Hope, the group of women competing in the Race Across America in support of PHA, announced a new featured team sponsor – Bayer HealthCare. Read more from this announcement on Team PHenomenal Hope’s blog.

Wednesday, February 26, 2014

Wristbands of Hope

Have you visited PHA’s store lately? The store is full of items to help spread awareness about pulmonary hypertension. You can make a difference by purchasing our wristband of HOPE today! By simply wearing your wristband out in your community you can create awareness every day.

Purchase yours today

Help Your Kids Understand Pulmonary Hypertension

Looking for a fun and easy way to help your kids understand PH? PH Kids is a new, kid-friendly website designed to help kids learn about pulmonary hypertension (PH).

Try PH Kids!

Connect with Support in Your Area

Do you have a pulmonary hypertension support group in your area? Support, education and hope are one of the many things you’ll find at a support group meeting. Groups meet quarterly, bimonthly and monthly. Check out our website to find out if a group is meeting near you. If there are no groups, consider starting one!

Find a support group

Tuesday, February 25, 2014

Honor Someone Special with a Note of Thanks and Remembrance

Many people are affected when your life or the life of your loved one has been touched by pulmonary hypertension. Do you know someone who has made a difference in your life? Or even a whole team of people who have helped you on your journey?

Honor those special individuals with a Note of Thanks and Remembrance. You can make your appreciation or memories known to more than 1,500 attendees expected at Conference. What a great way to recognize someone!

For $25/entry (50 word maximum) your note will be printed in the Conference program book and shown on the Conference slideshow. All proceeds will support the Conference Scholarship Fund and help patients fulfill their dream of attending Conference.

Notes must be submitted by April 15 to be included in both the program book and slideshow, and by May 15 to be included in just the slideshow.

Submit a note today

Family Planning with Pulmonary Hypertension

PHA Web Resource

If you’re a woman living with pulmonary hypertension and you’re thinking about starting a family, it’s important to have a conversation with your pulmonary hypertension specialist and your primary care physician. PH experts recommend that PH patients avoid becoming pregnant due to the dangerous risks it poses to both mother and child.

Learn more about why pregnancy poses a risk, what type of birth control you should consider, your options for having children, such as adoption, and more.

We Don't Want You to Miss Out!

Are you excited about PHA’s 2014 International PH Conference and Scientific Sessions? Conference will be in Indianapolis, Ind. June 20-22, and we are expecting to see our largest gathering of PH patients, families and medical professionals.

Did you know that to attend Conference you must be a member first? We don’t want you to miss out so check your membership status today! To join or renew membership, please visit our website, email Membership@PHAssociation.org or call 301-565-3004 x756.

Learn more

Monday, February 24, 2014

30 Million Strong Banner


The National Organization for Rare Disorders (NORD) has told the world that 30 million Americans are living with one of the 7,000 identified rare diseases. We are only unheard when we stand alone. It's time to actualize that number. That's why PHA created this Rare Disease Day banner. We encourage you to use it on Facebook, your blog or website, and if you can, please credit the Pulmonary Hypertension Association for it's creation.

Download banner here

Be Your Own Advocate

When it comes to working with your specialty pharmacy, you need to be your own advocate, just as you were in the earlier stages of your pulmonary hypertension journey. We have setup a feedback form to help inform our specialty pharmacy partners about things they are doing well and areas they can make improvements.

Speak up

Ask a Pulmonary Hypertension Specialist

PHA works with members of the medical community to help get you answers to your questions about living with PH. Learn more and submit your own questions to “Ask a PH Specialist” – just one of the many benefits of staying connected to PHA!

Read and ask questions on Ask a PH Specialist

Friday, February 21, 2014

Question of the Week: Connecting with PHers

Question of the Week: How do you stay connected with other PHers? Respond in the comments below.

Patient Phone Support

It's time for our monthly patient telephone support group. Join PHA’s own Kim Lamon-Loperfido and Carol, support call facilitator, on Thursday, Feb. 27 at 8 p.m. ET/5 p.m. PT. Join fellow patients to chat and share some time together. Get ready, Get set, Go sign up!

Thursday, February 20, 2014

Family Session at Neonatal and Childhood Pulmonary Vascular Disease Conference

PHA invites you to a special Family Session at the University of California, San Francisco's 7th International Conference on Neonatal & Childhood Pulmonary Vascular Disease on Saturday, March 29, 2014 in San Francisco, Calif.

Learn more

What it Means to Be Brave to Anne Sperando

Chloe Temtchine, a singer/songwriter with PH, and Anne Sperando, a fierce advocate and champion to the PH community, spent an afternoon together discussing what it means to be brave. Chloe's new song "Be Brave" will be available on iTunes on March 29, and 50 percent of the proceeds will benefit PHA. In the weeks leading up to the release, we will be sharing more information about Chloe and about what being brave means to the PH community.

Watch the video below or on YouTube.

21 States Committed to The PHenomenal Mile

The PHenomenal Mile will take place on April 12 – have you committed to walking with us?

So far, 21 states are represented on the map and these states will join us for the nationwide day of unity. Our goal is to get every state represented. Check out which states are already on the map and learn how to get yours listed!

Join The PHenomenal Mile

Wednesday, February 19, 2014

Lantos Grants Helping the PH Community from Across the Globe

Tom Lantos Innovation in Community Service Awards seek to create opportunities for those in the PH community to try out new ideas that hold the promise of more rapidly advancing our common cause. Here are some stories of how they have benefited the PH community around the world.
As many as 10 awards of up to $5,000 each will be awarded in 2014. Apply online by Tuesday, April 15, 2014.

If you have questions, or you'd like to brainstorm your project, please contact LantosGrants@PHAssociation.org.

This program is supported by an unrestricted educational grant from Gilead Sciences.

Meet PH Kid, Madison

"I'd like to tell other kids who have PH that sometimes you might feel like you are the only ones with PH, but you're not ... I felt a bit different than other kids, but now it is more normal for me. My friends are still my friends. I am still Madison. I just have PH."

Meet other kids like Madison at PH Kids, PHA's new website where kids can learn about pulmonary hypertension.

Tuesday, February 18, 2014

Essentials for Living with Pulmonary Hypertension

If you or someone you know has been recently diagnosed with pulmonary hypertension, we are here to support you! This webinar for newly diagnosed patients hosted by Deedre Boekweg, RN, BSN, CCRP, will be held on Feb. 27 at 3 p.m. ET/ 12 p.m. PT. Deedre is a clinical nurse coordinator for The Pulmonary Hypertension Center of Excellence at The Intermountain Medical Center in Salt Lake City, Utah. She has been working with PH patients since 2000 and started conducting research in 2007. Please join us for this informational webinar and to discuss the basics of living with PH, including treatments and coping with this disease.

Register here

Monday, February 17, 2014

Jacqueline’s Journey

Jacqueline Kirk, a PH patient who didn’t let her diagnosis keep her from enjoying life. Jacqueline shares how she doesn’t let PH interfere with living her best and states that, "I am not going to stop doing what I love because it is a little more difficult”. Like so many other patients living with PH, Jacqueline hasn’t given up HOPE.  

Saturday, February 15, 2014

Patient to Patient Support

Don’t let your diagnosis of pulmonary hypertension get you down. Join our patient to patient support line with volunteer Haley to discuss life with PH. You can call toll- free   1-800-748-7274 to speak with an experienced patient. The support line is one of the oldest ways to reach out to other patients and community members for guidance to living with PH.


Jacqueline Kirk, a PH patient talks about her journey and living with pulmonary hypertension. She states that, "I am not going to stop doing what I love because it is a little more difficult." We understand that every day will not be easy but there is HOPE. Join patients like Jacqueline and call the support lines now! 

Friday, February 14, 2014

“I Can’t Believe They Said That!”

From Hannah Lahmeyer on PHA’s Generation Hope Blog…

From one patient to another, we have all had that moment when we think to ourselves, “I can’t believe they said that!” Sometimes it is a stranger at the grocery store, a co-worker or the naïve family member. Normally the closer the person is to you the more it hurts and the longer it consumes your thoughts. It is very difficult for others to understand what life is like living with a serious medical condition. The purpose of this post is for you to share with those most involved in your life. My hope is that it will be a gentle guide to help the communication between you and them. The following guidelines pertain specifically to pulmonary arterial hypertension (PAH).

Read Hannah's full story

It is very difficult for others to understand what life is like living with a serious medical condition. Are you a young adult PHer? We are looking for more bloggers for our Generation Hope blog. Contact Outreach@PHAssociation.org if you are interested and to learn more.

Question of the Week: Volunteering

Question of the Week: Do you volunteer in your community? What do you do? 
Please respond below.

Today is Organ Donor Day

More than 120,000 Americans are waiting for life-saving organ transplants. Today is Valentine's Day, but to those waiting on a heart, including pulmonary hypertension patients, they are hoping for a real, beating heart rather than a heart-shaped box of chocolates.

Learn more about organ donation, register and spread the word

PHA Offices Closed Monday

PHA offices will be closed Monday for the holiday.

Thursday, February 13, 2014

Help Improve Specialty Pharmacy Services

PHA's Specialty Pharmacy Advisory Board needs your participation in an important program that can impact the care your specialty pharmacy provides. We have setup a feedback form to help inform our specialty pharmacy partners about things they are doing well and areas they can make improvements.

Thank your specialty pharmacy for all they do, or make suggestions for improvement. Submit a comment

Rare Disease Tweet Chat with NORD and ABC News

30 million people are living with a rare disease, and our friends at the National Organization of Rare Diseases (NORD) and ABC News are spreading awareness through a tweet chat! Dr. Richard Besser with ABC News (pictured right) and Dr. Marshall Summar, MD, of Children's National Medical Center will be presenting “Conquering Rare Diseases” on Feb.25, at 1 p.m. ET/10 a.m. PT via twitter. You can join the discussion at @RareDayUS and tagging hastag #abcDrBchat in all your tweets.

RSVP by email: rarediseases.org@cmail1.com and elizabeth.j.neporent@abc.com

SteadyMed Therapetics CEO Set to Compete for Race of Our Lives Campaign

Jonathan Rigby, CEO of SteadyMed Therapeutics, will compete in Ironman 70.3 in New Orleans on April 13 in support of Team PHenomenal Hope and the Race of Our Lives campaign. How awesome is that?

Jonathan is a type-1 diabetic who wears an insulin pump round-the-clock, so he empathizes with PH patients who also use a pump for medication.

Jonathan has set up a virtual fundraising page to raise funds for PH research and patient-programs, while also raising awareness.

Learn more about Jonathan’s challenge and how you can support him

Wednesday, February 12, 2014

Pulmonary Hypertension in the Setting of Liver Disease

Do you or someone you know have liver disease and pulmonary hypertension? Our 2012 International PH Conference recording on pulmonary hypertension in the setting of liver disease discusses complications of living with both PH and liver disease, and considerations as far as medical and liver transplants.

The discussion panel is presented by Sonja Bartolome, MD, FCCP, UT Southwestern Medical Center; Steven Kawut, MD, Perelman School of Medicine, University of Pennsylvania; Laura Restall, RN, UT Southwestern Medical Center.

View the recording and learn more about both conditions

New, Kid-Friendly Website about Pulmonary Hypertension


PH Kids is a new, kid-friendly website designed to help kids learn about pulmonary hypertension (PH). Help your child or their friends learn about PH, prepare for a hospital or clinic visit, and get inspired to be part of the fight for a cure.

Visit PH Kids

Telephone Support for Caregivers

We understand that caring for someone who has pulmonary hypertension is not always easy, so join us for our telephone support group designed especially for you. The support group will be held Wednesday, Feb. 9 at 1:30 p.m. ET and will discuss strategies on caring for adults. You can call in toll-free and connect with other caregivers.

Learn more and register

Tuesday, February 11, 2014

Join Us for Pediatric Transplant Webinar

Pediatric Webinar: Pediatric Transplant
Tuesday, Feb. 18, 8:30 p.m. ET/5:30 p.m. PT


Dr. Goldfarb and his team from The Children's Hospital of Philadelphia will explain what you need to know when making the decision to list your child for pediatric transplant, the transplant process, and how to prepare a child for transplant and post-transplant life. 

Register now!

Fifty Percent of the U.S. Population Lives within a Day’s Drive of Indianapolis

PHA’s 2014 International PH Conference and Scientific Sessions will take place June 20-22 in Indianapolis, and we hope to see you there! Registration is now open and early registrants receive a $50 discount on registration fees. Register for Conference today

Did you know that 50% of the nation’s population lives within a day’s drive of Indianapolis? Indianapolis is even nicknamed “The Crossroads of America” because it is the hub of many major highways and connects the city to several major cities across the country. That makes Indianapolis a great location for our Conference which draws attendees from across the U.S. and the world!

Visit our Conference Travel Information page to learn more about traveling to Conference – whether by car, train, bus or plane – as well as resources and tips for travel with pulmonary hypertension.

News: Discovery of Genetic Mutations that Cause PCH

A team of researchers, led by physicians and scientists at Intermountain Healthcare's Intermountain Medical Center and ARUP Laboratories, has made a medical breakthrough by discovering genetic mutations that cause a rare and deadly lung disease.

The disease, pulmonary capillary hemangiomatosis or PCH, is a rare cause of pulmonary hypertension, which occurs predominantly in young adults. PCH affects less than one in a million people, and has been extremely difficult and expensive to diagnose, as well as challenging to treat.

Read PHA's full release

Learn What to Do in Emergencies

When Urgent or Emergent Situations Arise: What Should I Do?
Tuesday, Feb. 18, 2 p.m. ET/11 a.m. PT
webinar

Urgent or emergent situations arise in all of our lives when we least expect them. As pulmonary arterial hypertension (PAH) patients, it is imperative that your PAH provider and team be notified immediately to coordinate your care. In this webinar, Wendy Hill, MSN, RN, NP-C, will assist you in learning how to address these untimely occurrences with your PAH team and in understanding the importance of having and implementing a plan.

Register now

Monday, February 10, 2014

Primer Simposio LATAM de HP Pediátrica

El Primer Simposio de Hipertensión Pulmonar en Niños se llevara a cabo en Cartagena de Indias, Colombia en las fechas de Febrero 21 y Febrero 22.  Especialistas sobre este tema en las Américas y en Europa se reunirán en el congreso para dar esta conferencia a médicos tratantes.  ¿Usted piensa que el médico tratante de su hijo/a podría estar interesado en asistir? http://htapulmonar.scc.org.co/

Learn About Topics Important to You

PHA Classroom is a great place to learn about PH topics of interest to you with live events and recordings you can watch anytime from anywhere. Recently, PHA Classroom launched e-Learning Guides that bring together Classroom recordings with other useful PHA resources that cover a variety of popular topics. So far we have:
  • Traveling with PH
  • Parenting a Child with PH 
  • Nutrition and Exercise with PH
  • Emotional Well-Being Through the Holidays
  • Self-Empowerment in the New Year
Check out the PHA Classroom e-Learning Guides

Sunday, February 9, 2014

In the News: Chest Radiography Highly Predictive of Pulmonary Hypertension

news-medical.net: Chest radiography is very accurate for predicting pulmonary hypertension (PH), report researchers. “We felt inappropriate to rule in a radiologic diagnosis of PH only on the basis of a prominent main pulmonary artery,” the researchers write in Thrombosis Research. For this reason, they required the presence of at least one additional finding for a PH diagnosis: isolated enlargement of the right ventricle; a right descending pulmonary artery diameter greater than 16 mm; or pruning of peripheral pulmonary vessels. “By adopting these criteria, chest radiography yielded high diagnostic accuracy for PH,” they report.

Read the article

PHA UK Conference 2014: Coming Soon

What do clay pigeon shooting and breathing techniques for pulmonary hypertension have in common? The PHA UK Conference 2014 will include sessions on both! The conference will be held April 25-27 at the Crowne Plaza Heythrop Park Hotel in Oxfordshire. Learn more

To register, contact office@phassociation.uk.com.

Saturday, February 8, 2014

In the News: ECG Abnormalities Progress During Course of PAH

medwireNews: Researchers have identified a number of electrocardiography (ECG) variables that progress between diagnosis and death in patients with pulmonary arterial hypertension (PAH). Their study “suggests potential new ECG predictors of outcome that deserve further investigation,” say Adriano Tonelli and colleagues, from the Cleveland Clinic in Ohio.

Read article

Faces of PH: Amanda DaSilva

Amanda DaSilva shares her reflections on attending a PHA International PH Conference and Scientific Session as a pulmonary hypertension caregiver.

"My sister was diagnosed in 1998 with PH. It took a long time to find reliable resources and when we stumbled across PHA, it was as if we found the light at the end of the tunnel."

Read Amanda's Conference story | Visit PHA's 2014 Conference site

Friday, February 7, 2014

Tips on Transitioning Medications

Are you transitioning medications? Learn about PHA’s helpful tips to transition to new medications. The resources provided will help you ask your doctor the right questions about new medications and how they will affect your health. The article also considers insurance coverage and tips to get your new medications smoothly.

Read about transitioning medications

Question of the Week: Telephone Support Groups

Respond in the comments below.

A Real Heart for Valentine's Day

More than 120,000 Americans, including pulmonary hypertension patients, are waiting for life-saving organ transplants. A single donor can save up to eight lives. This Valentine’s Day, give a gift from the heart by spreading the word about organ donation.

Learn more and encourage organ donation | Learn more in PHA's transplant resources

Thursday, February 6, 2014

Apply for a Tom Lantos Innovation in Community Service Award

PHurry PHriends by Kathy Groebner
Named for one of the true heroes of the PH Community, these grants will provide support and funds to members of the PH community who would like to make a significant impact in the following ways:
  • Increased public awareness
  • Education
  • Resource development
  • Advocacy
  • Other initiatives bringing benefit to the PH community
As many as 10 awards of up to $5,000 each with up to $1,000 towards attending PHA’s 2014 International PH Conference and Scientific Sessions will be awarded in 2014.

Apply online by Tuesday, April 15, 2014

If you have questions, or you'd like to brainstorm your project, please contact LantosGrants@PHAssociation.org.

This program is supported by an unrestricted educational grant from Gilead Sciences.

Chloe Temtchine to Release Song to Benefit PHA

We reported about Chloe Temtchine, a pulmonary hypertension patient who is a singer/songwriter, in November as she prepared to sing at our New York Tri-State Area Chapter Gala. Chloe is the 2011 AVON National and International Songwriting Competition Winner. A mere months after her diagnosis, Chloe valiantly launched her "No Pressure Tour" with an intimate live performance at the NY gala, singing while using her oxygen tank which she affectionately calls “Steve Martin.”

Chloe is now preparing for the release of her song "Be Brave," which she wrote when she got out of the critical care unit. "The song is intended to serve as an anthem for all those afflicted directly or indirectly by pulmonary hypertension," Chloe says. Chloe will be donating half of the proceeds to PHA.

How can you help? Mark your calendar for March 29 and download "Be Brave" from iTunes that day and have everyone you know do the same. If we can get a lot of people to download the song on the same day we can push it up to the top 10 on iTunes.

In the coming weeks we will be sharing more information about Chloe and about what being brave means to the PH community. Check out this first video from Chloe on being brave below or on YouTube.

One Day – One Community – One Mile

In June 2014, Team PHenomenal Hope will be cycling more than 3,000 miles across America to honor PH patients and to raise critical funds for PHA and awareness of PH. Will you walk one mile to support them?

You can get involved in their journey, right where you live. We are inviting the PH community to join us for the PHenomenal Mile, a nationwide day of action in solidarity with Team PHenomenal Hope on Saturday, April 12. Wherever you live, whatever your capacity, commit to walking with us.

Registration for the PHenomenal Mile is FREE. Help us with our goal to have people walking in every state.

Learn more and register for the PHenomenal Mile

From Rare to Everywhere, Rare Disease Day Feb. 28

Nearly 1 in 10 Americans is living with a rare disease. That's 30 million people. Each disease community may be small, but on Rare Disease Day – Feb. 28 – we’re working together to show that we aren’t rare. We’re everywhere.

Rare Disease Day is a great way to raise awareness of PH while supporting a larger cause. Get involved with one of the opportunities below or find even more at www.RareDiseaseDay.us.

Love is in the Air

Only days away from Valentine’s Day, our family here at PHA is celebrating love with a webinar on Feb. 12 at 2 p.m. ET/11 a.m. PT. The Intimacy and Relationships webinar will offer two different perspectives with presentations from Rebecca Fenton, RN, from Beth Israel Medical Center, and PH patient Kevin Paskawych. Both presenters will discuss different approaches to intimacy and relationships while living with PH. Don’t miss out on the opportunity to spread the love!

Register now

Tuesday, February 4, 2014

Grabación Nueva en PHA Salón de Clases

En la presentación virtual, Comunicación Efectiva en Pacientes con Hipertensión Pulmonar, Adriana González Guerrero, psicóloga en el Instituto Nacional de Cardiología, discute la importancia de comunicación acerca su hipertensión pulmonar. En esta grabación nueva en PHA Salón de Clases, La Licenciada González Guerrero da consejos que posibilitan establecer comunicación efectiva dentro de sus círculos sociales, incluyendo comunicación con sus colegas y jefe en su trabajo, con sus amigos y con sus hijos y novios en sus familias. Participantes podrán focalizar los recursos proveídos en esta presentación para comunicar efectivamente.

PHA Salón de Clases tiene más grabaciones en español para pacientes con HP y sus cuidadores. Vea más grabaciones en www.PHAssociation.org/Classroom/Landing/EnEspanol.

Making the Road to Treatment Easier

Getting a prescription for a PH treating medication may be only the first stop on the road to actually getting your treatment in hand. Your insurance provider must cover the cost of the medication. Then, your specialty pharmacy must deliver and bill accurately. When it comes to working with your specialty pharmacy, you need to be your own advocate, just as you were in the earlier stages of your PH journey. PHA’s Specialty Pharmacy Feedback Form can help.

Use the form to tell us when things are going well with your specialty pharmacy or to share your concerns. PHA will collect your comments (anonymously if you choose) and our specialty pharmacy partners will use them to improve the service they provide. Your input can help the entire PH community.

e-Courses for Newly Diagnosed Patients and Families

PH Ready and PH Ready Caregivers can be started at any time! The Newly Diagnosed Self-Study: PH Ready and its companion curriculum, PH Ready Caregivers offer a series of e-courses that serve as a roadmap for newly diagnosed pulmonary hypertension patients and caregivers.

Learn more and register