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TBD: Patients’ Organizations: A Global Overview

Poster Presenter

      Grigorios Agkyralidis

      • Head of Regulatory Affairs


Purpose of this poster is to provide an overview of the patients’ organizations status world-wide.


To achieve this, data regarding the members of International Alliance of Patient Organizations (IAPO) were retrieved. Despite the geographical classification implemented by IAPO (Europe, Africa, Eastern Mediterranean, Latin America & The Caribbean, North America, South-East Asia, Western Pacific,


In Europe, there are 101 Patients’ Organizations as members of IAPO. The majority of them are cross-disease associations. 6 Patients’ Organizations are devoted to Cancer while Immune and autoimmune diseases, Diabetes, Psoriasis and Heart-related disorders count 4 associations each. Other organizations are related to causes or conditions such as: Infertility, Hepatitis, Dementia, Epilepsy, Osteoporosis, Rare-diseases. In North America reside 25 Patients’ Organizations in total as IAPO members. Similar with Europe, most of them (5) are cross-disease associations. Immune and autoimmune diseases, Rare diseases, Heart-related disorders and Skin-related disorders count 2 organizations each. Other organizations are devoted to causes or conditions such as: Cancer, Infertility, Hepatitis, Diabetes, Genetic related disorders, Arthritis/ Rheumatism. In Asia, 35 Patients’ Organizations are members of IAPO. 15 associations are cross-disease, 6 are related to Cancer, 3 to Thalassemia and 3 to Immune and autoimmune diseases. In Latin America & The Caribbean there are 68 IAPO members. Here the outlook is a bit different. Most of the associations are related to Cancer (14) and Psoriasis (11). There are 4 cross-disease organizations as well as for Rare diseases, Diabetes, Arthritis/ Rheumatism, Heart-related disorders and Cystic Fibrosis. In Africa 46 Patients’ Organizations are members of IAPO. 17 are cross-disease associations and 8 are related to HIV/AIDS. 4 associations pertain to Liver-related disorders and 3 to Mental health disorders. Last but not least, Australia counts 9 Patients’ Organizations, with 3 of them related to Cancer, 2 cross-disease, 2 related to Infertility, and 1 for Genetic-related disorders and Pain, respectively.


As a conclusion, Patients’ Organizations is an important factor to advocate internationally, strengthen patients’ voice and build multi-stakeholder alliances to working collaboratively with healthcare professionals, policy makers, academia, and the industry. There is a clear picture that the “Western-world” is ahead with regards to both the number of patients associations and the relevant causes or conditions that are covered by them, aside to cross-disease organizations. It is also important that countries in the rest of the world have made great leaps and significant evolution towards the establishment of patients’ associations. Yet, more awareness to be raised is needed for the patients so as their engagement to the ecosystem centered to them to be maximized.