Pulmonary Hypertension Association Update
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Jaeger Spratt Pulmonary Hypertension Association
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Pulmonary Hypertension Association Update
- 1. The Pulmonary Hypertension Association Home of the PH Community: An Update Jaeger Spratt, pronouns: they/them PHA Advocacy and Treatment Access Program Manager November 17, 2023
- 2. Our mission: To extend and improve improve the lives of those affected by PH. PH. Our vision: A world without pulmonary hypertension, empowered by hope.
- 3. Support Groups Peer Support “It's been a lifeline, especially during the pandemic, plus it's been a great place to make friends and talk about things other people just don't understand.” Patient Support Line Email Mentors “Hearing what others around the country are experiencing and how they are coping is helpful.” Facebook Groups
- 4. Patient & Family Education - In Person April 6, 2024 – Houston, TX October 2024 – Arizona
- 5. Patient & Family Education - Print & Digital
- 6. Treatment Access & Advocacy Visit PHAssociation.org/help for financial assistance resources
- 7. Quality Care
- 8. Contact us: Memberships@PHAssociation.org Join the Pulmonary Hypertension Association, the world’s largest organization focused on: • Raising pulmonary hypertension awareness. • Empowering and supporting patients and their families. • Building meaningful connections. • Finding a cure. Join today: www.PHAssociation.org/join Pay it Forward: Become a PHA Member
- 9. November is Pulmonary Hypertension Awareness Month! Visit PHAssociation.org/awarenessmonth/
- 10. Save The Date PHA 2024 Stronger Together August 15-18, 2024 Indianapolis, IN
- 11. Contact PHA! Patient-to-Patient Support Line: 1-800-748-7274 PHA Office: 301-565-3004 PHA on the Web: www.PHAssociation.org
Editor's Notes
- Jaeger, name, pronouns, and title Thank you all for joining today. Thank you to the Duke and U.N.C. Terry Fortin, MD, Duke Jimmy Ford, MD, UNC teams for coordinating this great event, so happy to see you all here.
- PHA’s peer support programs offer the opportunity to connect with others with PH no matter your circumstances –including in person and virtual support groups, the patient-to-patient support line, email pen pals, and facebook groups The support groups are seeing a robust return to in-person meetings, while also keeping virtual and hybrid formats available to increase accessibility for those unable to attend in-person. We have recently added a Facebook Group for transplants – patients who are considering transplants, in the process of preparing for a transplant, or in post-transplant recovery and onwards are all welcome.
- This year PHA held community workshops in Boston and San Diego. PH Community Workshops are a day-long regional forum for those living with PH, their families, and caregivers to connect with each other as well as local PH experts in their area. Workshop sessions cover a variety of topics including treating and managing PH, advocacy strategies, and the latest clinical research. Our 2024 workshops will be on April 6th in Houston, TX and sometime in October in Arizona.
- PHA is pleased to now offer the Navigating PH guide in Spanish as well as English We also have many informative webinars through PHA Live, and recordings of these great resources are all available for free to view from PHA Classroom
- Help page/ open enrollment season Check out the Action center
- There are now over 80 accredited centers, many of which are involved with the pulmonary hypertension registry – PHA is invested in research, invested in promoting the highest quality of care for all patients (give a nod to Duke & UNC – of course, all of you are already receiving excellent care, but in case any PH patients in a different region of the country are looking for care, PHA maintains a list of accredited centers and providers who are members of PHA on our website)
- A big thank you to those of you here who are already PHA members. And if you’re not yet a member, consider joining! It’s an affordable way to support PHA and all the work we’re able to do in and for the community.
- Also, we’re in PH Awareness Month! This year our theme (as mentioned during the support group discussion) is Living Phearlessly. We have a wonderful site where many people in the PH community have shared some great stories and wonderful pictures about what inspires them to live fearlessly
- And one last reminder to save the date for PHA’s Conference next year! I attended my first Conference with PHA last year in Georgia and the energy and sense of community throughout the weekend was absolutely inspiring. I highly recommend going if you are able.
- And that’s all! I’ll leave you with a few ways to get in touch with PHA, and you are welcome to come find me later in the day if you have any questions about PHA – I’ll do my best to answer them, or get you in touch with someone who can.