ASOCIACIÓN DE FAMILIARES Y ENFERMOS DE FIBROSIS PULMONAR IDIOPÁTICA

Established in 2008, the Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática, Fibrosis Familiar y Trastornos Relacionados (AFEFPI) was founded to address the needs of patients and families affected by idiopathic pulmonary fibrosis and related conditions. The organization is headquartered in Spain and operates as a non-profit entity.

AFEFPI exists to support individuals and families affected by idiopathic pulmonary fibrosis (IPF) and related disorders. The organization aims to improve the quality of life for patients, promote scientific research, and provide comprehensive support and information to those affected by these conditions.

The organization specifically supports patients with idiopathic pulmonary fibrosis, familial pulmonary fibrosis, and related disorders, along with their families.

AFEFPI engages in several key activities, including:

• Advocacy for patient rights and access to care
• Educational initiatives to raise awareness about pulmonary fibrosis
• Direct support programs for patients and families

AFEFPI provides a range of support services to patients and their families, including:

• Information hotlines for guidance and support
• Consultations to assist with navigating medical and social services
• Educational materials and workshops to inform and empower patients

AFEFPI has been instrumental in promoting awareness and understanding of idiopathic pulmonary fibrosis at both national and European levels. The organization has successfully advocated for the approval of a written declaration on IPF in the European Parliament, which aims to address health inequalities and promote research and access to treatment across Europe.