Wednesday, March 4, 2015

Help Change the History of PH by Getting our PSAs on the Air

Make a phone call and change your life…and thousands of others. PHA’s public service announcements for TV and radio are sitting in inboxes in your local stations (11,000 stations across the U.S.).  Your call – even leaving a message – can get them from gathering dust to making a difference. Contribute one hour to move PH from rare to everywhere. We’ll even give you a short phone script. View our media guide on PSAs -- including a webinar on how to reach out to TV and radio stations.

Help change the history of PH by getting our PSAs on the air! For help on reaching out to the media about PSAs, contact, Renée Hockaday at 301-565-3004 X774, or Diane Ramirez at 336-425-6335.

2015 Tom Lantos Innovation in Community Service Applications Due March 25

Applications Due: March 25, 2015 

Named for one of the true heroes of the PH community, the Tom Lantos Innovation in Community Service Awards of $5,000, 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.

Lantos Award project ideas might include, but are not limited to:

  • Increased public awareness
  • Education
  • Resource development
  • Advocacy
  • Other initiatives bringing benefit to the PH community  

Lips Painted Blue - An Animated Series
Lips Painted Blue - An Animated Series is a previous Lantos Award Project.

Projects should focus on:
  • Researching and developing innovative ways to raise awareness and foster service to the PH community;
  • Extending the reach of an existing program that provides services to the PH community; or
  • Reproducing an existing program that provides services to the PH community in another geographical region or area to address unmet needs.
This program is not designed to fund:
  • Direct services, such as transportation to medical appointments
  • Financial support to meet individual needs
  • Fundraising events
The following people are not eligible to receive an award:
  • Any individual employed by PHA 
  • Any individual affiliated in any manner with Gilead
  • Any healthcare professionals with any ability to prescribe or order any Gilead product, or influence the prescribing or ordering or formulary placement of any Gilead product
Learn more and apply or send an email to

Tuesday, March 3, 2015

Living with a Rare Disease

The theme of this year’s Rare Disease Day was “Living with a Rare Disease.” And, few do that so well as PAH patient Fran Nelms, who credits early diagnosis and the attentive care of Dr. Barbara Santucci for her continued enjoyment of her active lifestyle.


Washington State Man Will Walk to PHA Headquarters
From Auburn Reporter - A 79-year-old man from Auburn, Wash., has made a hobby of completing cross country walks for a range of charities. This summer, Don Stevenson will walk nearly 3,000 miles across the country to the Pulmonary Hypertension Association's Headquarters in Silver Spring, Md., to raise funds and awareness.
Read the full article.

New International Research Program for PH Launched in Spain (Biomedical Research Networking Centers – Respiratory Diseases) has officially launched a new research program in pulmonary hypertension. The goal is to identify markers that can help in diagnostics and can find new therapeutic targets for this disease.

This large cooperative research project is coordinated by Dr. Joan Barberá with the collaboration of many other groups besides those involved in CIBERES, including researchers from across Europe and the U.S. and patient associations like the Fundación Contra la Hipertensión Pulmonar.  

Learn more. (PDF in Spanish)

Share Concerns, Suggestions or Praise for Your Specialty Pharmacy
“Thanks for [PHA’s] help, it’s the only reason things were resolved,” says Hada Monahan, in regard to her medication delay that was resolved by Hada completing PHA’s Specialty Pharmacy Feedback Form.

Now, it’s your turn – fill out the form with your own concerns, suggestions or praise for your specialty pharmacy. Your feedback will guide specialty pharmacy practices and improve services.

Help us help you. Submit your feedback.

Monday, March 2, 2015

News: Twins Look to Raise Funds for Transplant
From - A pair of Mississippi twins hosts a fundraiser to pay for a heart and lung transplant for one of them, a former athlete, who has pulmonary hypertension. Read the full article.