PHA Pediatric Resources
The PH Care Centers initiative seeks to identify centers with expertise in PH that have demonstrated an ability to properly diagnose the disease and have the capability to manage these complex patients. This program is part of PHA’s commitment to people with PH and their families.
Together, we can and must improve the quality of care for kids living with PH and support the families affected by this disease.
About PHA’s Pediatric Resources
PHA’s pediatric resources are created with the input of the PHA community, especially parents, young people with PH and pediatric health care professionals. Learn more about PHA’s pediatric programs by contacting KidswithPH@PHAssociation.org.
Order PHA’s Pediatric Resource Guide
In this publication, families will find:
- An overview of pediatric PH
- How to locate specialized pediatric PH care
- Ways to connect with other families through PHA
- Emotional support opportunities for all family members
- How to work with a child’s school
Each topic includes links to additional online resources, tips from members of the pediatric community and ways to find out more information. Download a free copy now, or head to PHA’s free materials section to order a copy.
Get Specialized Medical Care
Although there are some similarities between adults and children with PH, there are also differences. PHA’s Pulmonary Hypertension Care Center (PHCC) accreditation program now includes centers across the United States that treat children with PH. PHA’s programs to improve the quality of care for kids with PH include education, resources and networking opportunities for pediatric PH clinicians.
You can also consult PHA’s Find a Doctor Directory which lists members of PHA’s clinician and researcher membership network. Information here is self-reported by the provider, and PHA does not specifically endorse any individual physician. If searching this directory, select a pediatric specialty from the board certification drop-down menu.
PHA offers special in-person pediatric support groups as well as a regular telephone support group for parents. There are online communities for people to connect and an email mentor program to help you connect one-on-one.
The more you know, the better equipped you will be to advocate for your child in many different situations. Read these FAQs for parents of children with PH to learn more about the causes of PH in children, the available treatments and pediatric care centers. You can also learn how to navigate school and order free emotional coping guides and other resources from PHA’s online store.
PHA’s International Conference
PHA’s International PH Conference and Scientific Sessions is held biennially in a different city around the United States on even-numbered years. It offers programs for children, families and pediatric health care professionals. Activities for kids with PH and families of kids with PH, including the PHA Fashion Show and Kids’ Rooms, are available at Conference. PHA offers scholarships for pediatric patients and caregivers.
Resources and Events for PH-Treating Health Care Professionals
PHA Online University
PHA Online University is an online learning center for medical education and resources on pulmonary hypertension. Resources include courses, a resource library, research, access to the Advances in PH journal and Networking. Read More >>
PHA Preceptorship Program
Developed by the PHA Scientific Leadership Council, this program offers, at nationally recognized PAH centers, direct instruction on state-of-the-art PAH diagnosis and management for physicians and other health professionals who help care for patients with PAH. The PHA Preceptorship Program is designed to improve competence, performance, and patient care practices by instructing front-line clinicians in the highest quality of care for patients with PAH by combining didactic discourse and highly interactive case-based discussion. Read More >>
Robyn J. Barst Pediatric Research and Mentoring Fund
Named after a pioneer in the field of pediatric PH research, the Robyn J. Barst Fund advances the field by providing support for one-year mentorship for young clinicians and researchers. Grantees also complete a proof of concept research project. Read More >>
The PHPN Symposium
The PHA PHPN Symposium is an event held once every two years that brings together more than 400 PH-treating health care professionals to learn and earn continuing education; share research among peers; and network with other health care professionals. PHA’s 2019 PHPN Symposium, “Influencing the Practice: The Art and Science of Treating Pulmonary Hypertension,” was held in the Washington, D.C., metropolitan area Sept. 5-7, 2019. Read More >>
PHA’s International PH Conference and Scientific Sessions
PHA’s 2020 Conference will take place June 12-June 14 in Anaheim, Calif. PHA’s International PH Conferences bring together more patients, caregivers, medical professionals and other friends of PHA every two years to share information on the latest research, treatments and lifestyle issues with PH. Read More >>