We are here to serve…

Our support group network has grown to more than 275 groups throughout the United States and Puerto Rico. PHA coordinates the work of more than 340 leaders – patients and caregivers who are managing their health, their families and their lives – who also volunteer to run patient support group meetings. The Support Group Leadership Institute has enabled us to connect these busy leaders in meaningful ways including, but not limited to, providing web-based and telephone trainings. The Support Group Leadership Institute is made possible by an endowment from United Therapeutics.

Second Tuesday Trainings

SGLI: Postcards, Calendars and Maps – Oh, my!

October 11th, 2017|0 Comments

This training provides tutorials of PHA’s postcards/SGCF order form, map, calendar and meeting report from for PHA support group leaders.

What Every Leader Should Know About PH

April 12th, 2017|0 Comments

PHA provides volunteers with talking points to answer frequently asked questions about PH.

  • Coping Guides

Primer on PHA Resources – Print Materials and Support Groups

March 8th, 2017|0 Comments

PHA has a vast library of print materials. Learn ways you can use print materials to plan meetings, promote PHA membership and more!

  • Debra Watkins

Dec. 2016 – 2016 in Review and Planning for a Successful 2017

December 13th, 2016|0 Comments

What does "success" mean to you? What does it mean to your group? How can we start now to prepare for a successful year ahead? Leaders joined in a discussion about these questions and more

CTEPH Awareness through Support Groups

October 25th, 2016|0 Comments

Chronic thromboembolic pulmonary hypertension (CTEPH) is a form of pulmonary hypertension caused by old blood clots in the lungs (pulmonary emboli). CTEPH Awareness Day falls on the third Tuesday of November, and we want to

Insurance FAQs for Leaders

September 13th, 2016|0 Comments

Join PHA's Treatment Access Associate Nikki Blake for a presentation and discussion about insurance. As Support Group Leaders, you don't have to be insurance experts, but you are one of the first lines of defense.

Refilling the Punch Bowl – Compassion Fatigue

August 24th, 2016|0 Comments

Last year during a meeting of Support Group Leaders, a guest made this insightful observation: "You leaders are like the punch bowl at the party. Everybody comes to you to get replenished. My question is:

PAR for the Course – Planning, Advertising, Running Your Meetings –  Part II

July 24th, 2016|0 Comments

This nuts-and-bolts webinar is second in a series, "PAR for the Course - Planning, Advertising, Running Your Meetings." This webinar focuses on advertising. Laura Hooley is the support group leader of the Dartmouth Hitchcock Support

  • Care, Share, Be Aware

Fundraising & You

May 12th, 2016|0 Comments

Join Carl Hicks, PHA's Executive Vice President and our new Vice President of Development, Mary Kozik! They'll be talking to us about ways that we as leaders can advance the mission to improve and extend

Social Media: Facebook 101 for Support Group Leaders

March 23rd, 2016|0 Comments

Find and Organize Patients with Facebook: Communicate, Recruit and More! Are you using the power of social media to find new patients? Are you keeping conversation going among your members when your support group is

PHA News Just for Leaders

  • Brad A. Wong

CEO Update: PHA’s Commitment to Families of Children Living With PH

September 28th, 2017|0 Comments

Dear Community Member, During my travels this year to PHA on the Road and special events and meetings across the country, I have met many children living with PH as well as their incredible

Coming Full Circle: A Filmmaker’s Journey

September 28th, 2017|0 Comments

By Robert Nyerges Although it seems like just yesterday, nearly ten years have gone by since the passing of my mother, Helena Strauch. Neither my mother or myself knew a lot about her rare

Travel by Train: My 1,200 Mile PH Adventure

September 27th, 2017|0 Comments

By Barbara Holden People living with PH often have special travel considerations that require extra planning. The quickest route – flying – isn’t always an option. Sometimes the choice to not travel by airplane

Take Action: Speak Out Against Graham-Cassidy Healthcare Proposal

September 20th, 2017|0 Comments

Senators Lindsey Graham (R-SC) and Bill Cassidy (R-LA) introduced new legislation in mid-September to repeal and replace the Affordable Care Act (ACA). The Graham-Cassidy proposal is more far-reaching than other recent Senate proposals and could

Announcing “The Right Heart” – New PHA Blog Series of People Living Their Best Lives With PH

September 19th, 2017|0 Comments

Living with a serious and rare diagnosis like pulmonary hypertension (PH) can be isolating. The PHA community is a network where people can connect with others who aren't just living with PH, they're living their

PHA PHriends Offer Hope and Support for People With PH and Their Caregivers

September 19th, 2017|0 Comments

PHA PHriends are patient and caregiver volunteers in the PH community who are available to offer hope and support throughout your PH journey. Under the supervision of PHA, PHriends work with people with PH and caregivers

UPDATES: Resources and Information for People Affected by Hurricane Irma

September 14th, 2017|0 Comments

Recent hurricanes and wildfires have displaced and affected many in the PHA community. PHA is working with health care professionals, industry partners, specialty pharmacies, local PH Care Centers and support groups and providing updates and

Life with PH: Emergency Preparedness and Your PH Emergency Kit

September 7th, 2017|0 Comments

Nearly 700 members of the PHA community where affected by the devastation and flooding caused by Hurricane Harvey. For those impacted, PHA has worked with industry partners, specialty pharmacies, local PH Care Centers and

FDA Approves First PH Drug for Pediatric Patients

September 7th, 2017|0 Comments

This week, Actelion announced the first drug approved for the treatment of pediatric PH patients. Prior to the announcement, there were 14 FDA-approved PH treatments for adults living with the disease.  PHA will work

UPDATE: PHA and Partners Mobilize for PH Community Affected by Hurricane Harvey

August 31st, 2017|0 Comments

Updated 9/7/17 by Michael Knappen, PHA Patient and Caregiver Programs The situation in the Houston area remains critical, but many hands and hearts are reaching out to help! I'm personally touched by all the thoughts