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New Global Nonprofit Launches to Support Patients Living with Rare Lung Disease
S For Story/10665867
PAP Alliance Launches to Build Community, Accelerate Research, and Empower Patients Living with Pulmonary Alveolar Proteinosis (PAP)
DENVER - s4story -- Today marks the official launch of the PAP Alliance, a global nonprofit organization dedicated to empowering patients and families affected by Pulmonary Alveolar Proteinosis (PAP), a rare and often misunderstood lung disease. Through education, peer support, and advocacy, the PAP Alliance aims to bridge the gap between diagnosis and care while building a vibrant, connected community of those impacted by this complex condition.
Founded by Kelsea Arford, a patient living with autoimmune PAP (aPAP), the Alliance emerges from her personal journey of misdiagnosis, medical trauma, and eventual advocacy. "I created this nonprofit because I know exactly how lonely, confusing, and overwhelming this disease can be—and I don't want anyone else to go through it alone," Arford shares.
PAP is an ultra-rare lung condition caused by a build-up of surfactant in the alveoli, which can lead to significant breathing challenges and long-term health complications. With delays in diagnosis and limited resources, many patients face uncertainty and isolation.
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The PAP Alliance's mission is to empower patients and families through education, support, and a strong community, while accelerating pathways to timely diagnosis, effective treatment, and groundbreaking research.
Core Programs and Resources Include:
To celebrate the launch, PAP Alliance invites patients, caregivers, clinicians, and advocates to:
For media inquiries or interview requests with Kelsea Arford, contact kelsea@papalliance.org
Founded by Kelsea Arford, a patient living with autoimmune PAP (aPAP), the Alliance emerges from her personal journey of misdiagnosis, medical trauma, and eventual advocacy. "I created this nonprofit because I know exactly how lonely, confusing, and overwhelming this disease can be—and I don't want anyone else to go through it alone," Arford shares.
PAP is an ultra-rare lung condition caused by a build-up of surfactant in the alveoli, which can lead to significant breathing challenges and long-term health complications. With delays in diagnosis and limited resources, many patients face uncertainty and isolation.
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The PAP Alliance's mission is to empower patients and families through education, support, and a strong community, while accelerating pathways to timely diagnosis, effective treatment, and groundbreaking research.
Core Programs and Resources Include:
- Education Hub: A centralized online resource designed to serve as a central hub for all things PAP, offering expert interviews, educational guides, and practical tips from patient advocates and healthcare providers.
- Online Forum: A moderated platform for patients and care partners to connect, share experiences, and ask questions.
- Virtual Support Groups: Regularly scheduled sessions led by trained facilitators and peer mentors offering real-time support and community-building.
To celebrate the launch, PAP Alliance invites patients, caregivers, clinicians, and advocates to:
- Join the online forum and email list at www.papalliance.org
- Follow the conversation on social media @papalliance
For media inquiries or interview requests with Kelsea Arford, contact kelsea@papalliance.org
Source: PAP Alliance Inc
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