PH patient Lisa Raulston shares her pulmonary hypertension story and how persistence and research led her from misdiagnosis to ultimately discovering she had CTEPH.
Patricia Weltin is the founder of The Rare Disease United Foundation (www.rarediseaseunited.org), a non-disease speciﬁc, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. RDUF has also created groundbreaking programs like their Beyond the Diagnosis Art Exhibit, which travels around the country to medical schools and hospitals.
For former PH patient, Kathleen Sheffer, writing has become a tool for her to process her heart-lung transplant and the events leading up to it. Kathleen candidly shares her experience post transplant. You can also follow her journey through her blog "Rose Colored Mask" on the phaware website.
Dr. Ian Adatia has spent the last 25 years helping to improve care for babies, children and young people with pulmonary vascular disease. He is a clinician scholar and researcher. He has developed innovative therapies for children with pulmonary hypertension, and the first childhood pulmonary hypertension clinic in North America.