Thursday, January 29, 2015

This Monday: State of PHA Webinar

Online Webinar, Monday, Feb. 2, 3 p.m. ET year at PHA takes on a special meaning, and 2014 was no different. This past year was marked by continued progress in the fight against PH through research, education, advocacy and awareness. In this webinar, PHA President Rino Aldrighetti will discuss the current state of PHA and the growth of the PH community. He will review PHA’s recent accomplishments and share goals for 2015. Register for this webinar.

Tomorrow: Patient Education Webinar

Friday, Jan. 30, 2 p.m. ET / 11 a.m. PT

This webinar will review the key points presented in the Newly Diagnosed Self-Study: PH Ready and Newly Diagnosed Self-Study: PH Ready Caregivers curriculum. Dr. Vinicio de Jesus Perez of Stanford University will review the resources available to help patients and caregivers deal with PH in the long term, and offer tips on how to better cope and manage PH. Register for this webinar.

Wednesday, January 28, 2015

Let’s Get Rare Diseases Trending

Feb. 28 is Rare Disease Day. The National Organization for Rare Disorders (NORD) has more than a dozen infographics and videos you can share via social media (just copy and paste the image url). Get rare diseases trending.

PHA Announces Expanded Advocacy Agenda

Rep. Lois Capps (D-CA) meets with constituents.
Jan. 3 marked the beginning of the 114th Congress – a new, two-year congressional session with completely new legislation. This fresh start offers PHA’s legislative team the opportunity to consider how we can best meet the needs of the PH community over the next two years.

While PHA will, as we always have, work to pass PH-specific legislation such as the Pulmonary Hypertension Research and Diagnosis Act, we recognize that the current atmosphere in Congress is not supportive of disease-specific legislation. With that in mind, we’re turning to the PH community for your advocacy on and engagement in some new and expanded opportunities:
  • Treatment access. PHA knows that access to PH-therapies is one of the most critical issues that PHers face on a daily basis, so this is where we’ll be focusing much of our advocacy work this year. Whether the barrier is high deductibles and premiums, coinsurance costs, limited formularies and networks, or step therapy and prior authorization requirements, PHA is working to ensure that every PH patient has access to the treatment their physician prescribes.
  • Research and drug approval. Each year, there are many ways to advocate for increased PH research, improved drug approval processes, and policies that support the work of PH medical professionals. We’ll let you know about opportunities to advocate for National Institutes of Health funding, speak with Food and Drug Administration staff and more.
  • Advocacy focus groups. What’s your advocacy priority? Give PHA your input on our advocacy agenda, tools, campaigns and more. Contact for more information.
We Can’t Do It Without You!
PHA may be adjusting our legislative priorities, but we’re not changing our vision – that anyone whose life has been touched by PH has the right to fight back as much as health and interest allow. In fact, our advocacy efforts can’t be successful without you. Find out more about our grassroots advocacy network, the 435 Campaign, and how you can help. Email or call 301-545-3004 x753.

Tuesday, January 27, 2015

Parenting with PH Webinar

Tuesday, Feb. 10, 2 p.m. ET/ 11 a.m. PT
Even under the best circumstances, parenting is one of the most challenging tasks anyone can undertake. And as we all know too well, living with a chronic condition such as PH can be overwhelming at times as well. Combine the two, and it can be a recipe for disaster. But with a positive attitude, support system, game plan, and a little flexibility, it's possible to not only survive these trying years of parenting with PH – but to thrive! Join this PHA Classroom webinar to learn tips and tricks for easier healthy parenting from fellow parents with PH. Learn more.

2015 Insurance Open Enrollment Deadline is Feb. 15

Are you covered? Anyone seeking health insurance through the Health Insurance Marketplace must do so by Feb. 15, 2015. After the registration deadline, marketplace insurance can only be purchased during Special Enrollment Periods.

If you have any questions or need help applying, please contact Caring Voice Coalition at 888-267-1440.

Learn more about Marketplace Enrollment 

To stay up-to-date on insurance news, healthcare deadlines and treatment access issues, subscribe to PHA’s monthly Coverage Connection emails.  

Monday, January 26, 2015

Team Up with PHA!

Team O2 breathe is sweeping across the country, and we have lots of opportunities for you and your friends and family to join us in the coming year. Are you an athlete, looking for a challenge, or do you know someone who is? We’re looking for individuals in the community to join Team O2 breathe in 2015 and help us put those endurance skills to the test as we fight back against PH.

Anthony Piatek, Team O2 breathe member, runs in memory
of his mother, PH patient Mary Jo Piatek.
Team O2 breathe "Choose Your Own Event" allows members of the PH community to participate in any event of their choice, whether it be a 5K, swim, triathlon or other endurance event, all while raising funds and awareness for PH. At PHA, we enjoyed cheering on members of Team O2 breathe in 2014, and we’re excited for even bigger things in 2015, but we can’t do it without your support and participation.

Los Angeles Marathon
The ASICS LA Marathon will set out from Dodger Stadium and finish in Santa Monica, Calif., on March 15. Register today.

Shamrock Shuffle 8K
PHA Midwest and Team O2 breathe will participate in the 36th Annual Bank of America Shamrock Shuffle 8K in the heart of Chicago on Sunday, March 29. Sign up here.

San Francisco Marathon 
The San Francisco Marathon is a loop course, taking runners on a journey around the city with gorgeous views, including the San Francisco Bay. The event will take place on Sunday, July 26. Register today.

RCP Tiburon Mile Swim Tiburon              
The RCP Tiburon Mile has quickly become known as the most competitive and prestigious open water swim event in the world. Hundreds of swimmers will converge upon the Town of Tiburon, Calif., and battle the waters of The Raccoon Strait on Sunday, Sept. 20. Sign up for Team O2 breathe today.

Bank of America Chicago Marathon
Join Team O2 breathe on Sunday, Oct. 11, for the Bank of America Chicago Marathon. On race day, runners from all 50 states and more than 100 countries will set out to accomplish a personal dream by reaching the finish line in Grant Park. Learn more here.

Rock ‘n’ Roll Marathon & Half Marathon
Are you ready to rock? Join Team O2 breathe at the Rock n Roll Marathon and Half Marathon in the following cities:
-    Denver, Colo., on Oct. 18
-    San Antonio, Texas, on Dec. 5-6
-    Brooklyn, N.Y. (TBD)

By joining one of the events above, you can cross the finish line knowing you have helped raise awareness and funds for PHA. Visit, call 855-932-7255 x3 or email for more information.

PHA looks forward to cheering you on as an official member of Team O2 breathe!