IPPN Purpose

The objectives of the IPPN are the cross-border support and counselling of patients suffering from porphyria and porphyria patient associations in scientific, medical and healthcare policy matters with special attention to the international promotion as well as safeguard of their interests in regulatory, national and supranational approval processes of related therapies.

 To this end, the IPPN focuses on:

  • Transnational networking of porphyria patients and individuals who are affected by porphyria with scientific, medical or other expertise relevant in meeting the objectives mentioned above
  • Establishment and maintenance of relationships with international organizations representing porphyria patients and their interests
  • Information exchange between and to members
  • Contributions by porphyria patients with a medical and scientific background towards an improved scientific understanding of the porphyrias
  • International support of individual porphyria patients and patient organizations through the following activities:
    • Ensuring equality in access to healthcare and in funding of therapy costs
    • Promotion of porphyria awareness, e.g., through media campaigns, publications and lectures
    • Safeguarding the recognition of patient concerns by the public, political stakeholders and society
    • Promotion of the active patient participation in the healthcare system
    • Promotion of scientific and medical education as well as medical support in the field of porphyria
    • Maintenance of relationships with national and international affiliates as well as national and international umbrella organizations

Who we are:

Rocco Falchetto, PhD, biochemist

Cornelia Dechant, MD, cardiologist

Jasmin Barman-Aksözen, PhD, molecular biologist and porphyria expert
Francesca Granata, PhD, molecular biologist and porphyria expert
Eva Schupp, nutritional scientist
Mehmet Aksözen, PhD, economist, engineer and data scientist

Contact:

ippn@porphyria.network