HPN Asociación

HPN Spain Association (HPNE) is a nonprofit organisation established in 2008 by a family affected by paroxysmal nocturnal hemoglobinuria (PNH). It aims to address the needs of people living with PNH, improve their quality of life, and support their families. The association describes itself as the only organisation in Spain dedicated to providing this support nationwide.

HPNE offers information and public education about PNH, including resources on the condition’s causes, symptoms, diagnosis, risks, daily effects and treatment. Its materials cover specific medicines, allogeneic hematopoietic stem cell transplantation and other forms of care, alongside clinical guidance and links to further information. The organisation also provides psychological support, social information and guidance, and education and advice on relationships and sexual health.

Through events, webinars, conferences, research and awareness activities, HPNE connects patients with specialists and shares practical knowledge. It publishes activity reports, videos, magazines and personal stories, and organises initiatives such as therapeutic yoga. Individuals can support its work by joining, volunteering through its Teaming programme, donating or purchasing merchandise.