It is well known in the pulmonary hypertension (PH) community that successful treatment and care require patients, caregivers, families and healthcare providers to closely work together as a team. Whether in a clinical setting or more often while at home, everyone on the team has a critical role to play and requires a great deal of knowledge, information, expertise and support in order succeed. As the leading and most comprehensive organization dedicated to the PH community, the Pulmonary Hypertension Association (PHA) has grown and become the primary resource for trusted, timely and actionable services and support for each member of the PH team.
Today, PHA has robust programs for physicians, nurses, researchers and other healthcare providers. Developing these programs has been an important part PHA’s ability to serve as the heart of the PH community and to bring together all members of the PH team to learn, support and be inspired by each other. However, it is our focus on patients and caregivers and our programs that support them, which are the core of our mission and influence everything that we do. We are proud to currently serve nearly 17,000 patients and more than 4,400 caregivers.
As we strive to do more, we are committed to reaching out to the pediatric, associated diseases and other PH-related communities to ensure they know about our services, resources and desire to support them. We will continue to assess our current patient and caregiver programs to be sure they are valued and meet the needs of today’s patients, and we will continue to explore new and innovative ways to meet the needs of current and new members of the community.
I am pleased to share with you some of the many ways PHA helps empower patients and caregivers within our community. Whether you are new to PHA or a long-time member, please take a moment to read some of the highlights of our programs – I often hear, “I didn’t know PHA offers that…” I encourage you to use our resources and to get involved. As always, I welcome your questions about our programs at BradWongPHA@PHAssociation.org.
Community Member-to-Community Member Support
Support groups give PH patients and their loved ones a place to share and meet speakers who provide more insight into the disease. This year’s speakers have included associated disease specialists and experts and social workers who are helping us meet an increased demand for practical tips on how to live with a chronic illness and information on family-related matters that come with caring long-term for loved ones living with PH. Nine support group advisory boards give PHA insight on programs and services from the perspective of patients and caregivers. These board representatives lead unique support groups, including patients with associated diseases, long-term survivors, young adults 18-39, caregivers, parents, transplant patients, chronic thromboembolic pulmonary hypertension (CTEPH) patients, men with PH and people newly diagnosed with PH. Find a local support group and learn more here.
PHA On the Road
PHA On the Road is a free, day-long regional education program that delivers information on the diagnosis and treatment of PH to patients and family members in face-to-face local settings. PHA will host four of these events in 2017. Content for the 2017 forums builds off the success of last year’s events, which attracted growing numbers of people with associated diseases who prior to attending the free forums, were unware of PH or PHA. Apart from a chance to learn from local PH health care experts in intimate panel settings and general presentations, PHA on the Road forums offer patients and families an opportunity to connect peer-to-peer in support group sessions. We are securing dates and cities for the 2017 forums and will announce them as soon as possible. Learn more here.
PHA International PH Conference and Scientific Sessions
Held every other year, the Conference is the world’s largest gathering of patients, their loved ones and medical professionals who specialize in the rare disease. Patients, their families and caregivers meet with medical professionals, advocates and friends to learn the latest in research, treatments and life-style management information. Learn more about the 2018 Conference here.
Online and Virtual
PHriends – 800 number, email
PHA PHriends program is a network of patients and caregivers who volunteer to provide virtual peer support. While one-to-one phone support continues to be popular among our community, more patients are connecting with one another in online chats and having regular conversations with volunteer peer mentors via email. We’ve been fortunate to have volunteers who speak multiple languages. With the growth of our patient and caregiver community, we anticipate having a greater need in this area, particularly for Spanish-speaking volunteers. Learn more about PHA PHriends programs.
The numbers of members of myPHA, PHAs patient and caregiver social networking community, have doubled to more than 2,100 in less than a year. PHA designed this closed online community in 2015 to provide a safe virtual space for patients, their caregivers and families to connect with one another while having easy access to PHA-vetted educational resources. In recent months, mirroring changes in the support group network, we have seen noted increases among PH patients who join the closed social media community’s PH Plus forum for patients with associated diseases and their caregivers. Join this unique community here.
Educational and Informational Resources
This extensive database of knowledge and resources provides the PH community comprehensive resources. These include resources for patients, caregivers, health care providers, researchers, corporate donors, individual supporters and others who care about advancing PH care and finding cures for this complex disease. We are constantly updating this site with big changes, including making the site mobile responsive coming soon!
PHA Classroom is an online educational platform designed for PH patients and families. This program delivers the latest information on PH for patients and caregivers where they are, at any time of day and complements the in-person PHA on the Road Forums. This year’s webinars have included special topics for men and women with PH to discuss the specific PH intimacy and relationship challenges and obstacles they experience, a webinar on exercising with PH, and a session on advocacy covering what recent health care discussions mean for the PH community. Register for a webinar here.
Parents of Children with PH
These programs let parents connect with others who share their experience and learn about the resources available help them as their families adjust to life with this illness. These resources include webinars (live and recorded) about caring for children and teens with PH, links to local health care providers, information on planning for school, tips on planning for summer camp and much more. Learn more here.
PHA’s up-to-date health insurance resources help patients, families and health care professionals simplify the search for information on coverage. Our insurance guide offers tools and materials that assist with understanding and applying for insurance programs that best meet each family’s individual circumstances. Our resources cover information on obtaining authorization for treatment, the Medicare Part D prescription drug plan, applying for social security disability and more. Learn more here.
PHA is the established resource for helping patients locate additional financial support to pay for their care and treatment. We are constantly connecting with organizations that provide financial assistance so that we can make the community aware of potential new resources. Among the services available are programs for adults and children living with PH, legal assistance and government program resources. Learn more here.
International Patient Support
PHA provides support to international PH-community serving organizations as well as direct services to international patients. These online and in-person programs include the PHA International PH Conference and Scientific Sessions held during even-number years. Members of global patient serving communities are recipients of Conference scholarships and other grants. Four of our six 2016 Gilead Sciences-funded Tom Lantos Innovation in Community Service Awards grantees were international applicants who are now using their grants to develop creative programs that advance the PH cause in their countries. We’ve partnered with our international sister organizations for World PH Day on May 5. where we will launch a social media awareness drive that will continue throughout the month. Learn more about PHA’s resources for the international PH community here.
Envelope of Hope
PHA remains the number one resource for connecting patients and their loved ones to information that connects them with others. These resources are especially comforting when a patient learns he or she has the disease. PHA’s Envelope of Hope provides basic information that answers those first important questions people have when they or a loved one is diagnosed with PH. Learn more about our Envelope of Hope program here.
PHA recently updated educational print resources that give PH patients and caregivers information about their disease and how to manage it long-term. Understanding PH provides information about the basics of PH, tools to help patients find a PH-treating physician, various treatment methods and resources for coping.
Associated Disease PH & brochure series
The PH & series provides information on diseases associated with PH, including CTEPH, HIV, scleroderma and others. In the works is It Matters to Me: A guide to relationships and intimacy for people with pulmonary hypertension.
You may order PHA’s print resources here.
Access to Quality Patient Care
PHCC Accreditation Program
Two years after the launch of the world’s first PH Care Center (PHCC) accreditation program, PHA sees evidence that the program is contributing to raising the overall quality of care and improving long-term outcomes for PH patients. Since launching the accreditation program, PHA has designated 41 adult centers and six pediatric sites as CCCs. In September 2015, the PHCC program instituted the PHA Registry (PHAR) to measure improvements in the quality of PH patient care. This year, PHA has begun awarding accreditation to qualifying PH Regional Clinical Programs (RCPs), which will serve as pilots for this new phase of the program. Learn more about our PHCC program and access these sites here.
Building a Stronger Community
Host a Fundraising Event
Fundraising through special events to benefit PHA has always been volunteer-driven. With greater interest from patients and volunteers wishing to host fundraising events, we are enhancing resources to help leaders of PHA’s Grassroots Across America event organizers and other volunteers across the country plan and host these events. Access our Events Fundraising Toolkit here.
Become an Advocate
PHA patient and caregiver volunteers are empowered by opportunities to join us as advocates for our cause. Since February, volunteers have used PHA’s advocacy web tools to send more than 500 emails to Congress. Their messages called on senators and representatives to prioritize healthcare protections for individuals with PH and other rare diseases. Their efforts contributed to the failure of policy proposals that would have removed existing protections, such coverage for patients with pre-existing conditions. As Congress considers new health coverage proposals, our network of PHA volunteer advocates is growing. Learn how you can join these volunteers here.
Giving from the heart/Making a Gift
Your gift helps PHA combat PH through our many support and education programs for patients, caregivers and families, as well as the medical and scientific community. Patients, their loved ones and anyone who wishes to support our work can donate here.