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

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 parents, grandparents, aunts, uncles and siblings.  It is amazing how, in addition to doing all they can to ensure that these precious children have the best care possible, PH families fight back in other ways for the children they love and many they don’t even know. They take what little free time they have to advocate, volunteer and raise funds for support, education and research programs that benefit children and so many others affected by PH.

In my April CEO Update, I highlighted PHA’s commitment to empowering people living with PH and their caregivers and to reaching out to families of children living with PH to ensure they know about our services, resources and desire to support them.  Today, I am delighted to announce the launch of PHA’s special online home for families, caregivers, health care professionals and researchers who are looking for PH pediatric resources.  As part of PHA’s new mobile-friendly updated website, our unique comprehensive pediatric resource is accessible whenever and wherever you need it.  It is our hope that as you use it, you will share with us  your thoughts on how to strengthen it and what kind of additional resources we can provide to help make it easier for you to take care of your children and/or those you care for personally and professionally.  Here are some highlights of the information on our new pediatric resources home.

PHA’s Pediatric Family Resources

Our resources for families include PHA’s International PH Conference and Scientific Sessions, which, along with providing educational and support sessions for children and their families, offers education for all PH clinicians, including pediatric healthcare professionals.  PHA will offer some pediatric Conference scholarships that cover the costs for children living with PH to attend with a family member.  Watch for more information and eligibility details in January.

PHA’s pediatric family resources also include direct education programs — delivered in person and virtually — through: PHA on the Road and PHA ClassroomIn addition, through PHA’s Pulmonary Hypertension Care Center (PHCC)-accreditation program, pediatric PH clinics across the nation are gaining this special designation. The growing list of PHCCs now includes eight pediatric care centers. Our online resources help families locate pediatric-treating physicians at accredited centers and others in communities across the country. PHA’s wide-ranging online parent resources also include webinars, FAQs, tips, support groups and other ways to connect with other moms, dads and caregivers. Through our new portal, families can join myPHA, a social network exclusively for the PH patient and caregiver community that includes unique groups specifically for parents and teens. PHA is proud to be the trusted source for families looking for support and information on care and treatment of children living with PH. 

PHA’s Pediatric Clinician Resources                                    

PHA provides advanced educational opportunities for clinicians who care for children living with PH. Our in-person and online resources allow health care professionals to gain a better understanding of how the disease affects children, how to treat them and how to support them, their families and other caregivers. These programs provide clinicians information on PH by nationally recognized and experienced health care leaders, enabling PH health care professionals to learn and exchange experiences on caring for children and teens living with PH.  Among our programs are PHA Online University, PHA Preceptorship Program, and PHA Medical Education On-Demand Program.  In addition to these online and small group meetings, PHA’s International PH Conference and Scientific Sessions and PH Professional Network Symposium offer CME pediatric education for PH Professional Network PH Clinicians and Researchers.

PHA’s Pediatric Research Program

Furthering our strategic goal to catalyze research for a cure, PHA has had a firm commitment to funding research focused on PH, including studies looking for causes and new understanding of ways to treat and ultimately cure pediatric PH.  A centerpiece of PHA’s research program are our Dr. Robyn J. Barst Pediatric Research and Mentoring Fund awards for Pulmonary Hypertension.  Dr. Barst was a pediatric pioneer and leader in the field who founded the New York-Presbyterian PH Center. A hero to her patients, Dr. Barst also served as a PHA Trustee, Scientific Leadership Council member and in many other leadership roles in her service to the PH community. She conducted groundbreaking research and was a mentor to fellow PH clinicians. Funding for these pediatric research grants has come from generous donors, including community members who have lost children to the disease or have a child or relative living with PH. We are grateful to everyone who has supported our research program on behalf of children with PH.

PHA will continue to expand our offerings to support the pediatric PH community as we advocate for the PH community, empower patients and caregivers, promote quality patient care and catalyze research for a cure. If you’d like to join our cause, we welcome you and thank you in advance as you learn how you can help by clicking here.

Please feel free to contact me at BradWongPHA@PHAssociation.org if you have suggestions for how we can better serve the pediatric PH community.

PH Bill
2017-09-28T17:12:27+00:00 September 28th, 2017|