Organization SPwPID »Supporting Persons with Primary Immunodeficiency«
Is a nongovernment and nonprofit organization which is foregather patients with Primary immunodeficiencies (PID), their relatives and friends, experts and representatives of the institutions and other organizations, all human people interested and ready to help and involve in searching for patients with PID, early diagnostic of PID and, therefore, decrease the impact of this serious hereditary disorder over the quality of their life.
SPwPID established long since 1992. as a group for support parents whose children is suffering from PID and their families. The society was formed thanks to the initiative of the doctors of that time, from The Institute for mother and child care in Belgrade, dr Antun Mikuska and dr Mario Abinun, our first specialists in PID. Thanks to them and their visionary relation to the future and faithfulness of the scientists, we managed to survive very difficult time of the 90-es, holding by strong contacts with international community which these two doctors made possible (International Patient Organiyation for Primary Immunodeficiencies – IPOPI, www.ipopi.org, The Immune Deficiency Foundation - IDF,www.primaryimmune.org, The Primary Immunodeficiency Association – PiA, www.pia.org.uk, Europian Society for Immunodeficiency’s - ESID, www.esid.org, International Nursing Working Group for Immunodeficiency’s – INGID, www.ingid.org).
As a society, we registered first time in 1997. by the name JUGOPID, and since 2008. we have a present name. SPwPID is one of the establisher of the international organization IPOPI (International Patient Organiyation for Primary Immunodeficiencies – IPOPI, 1990, Oxford, UK) and one of its regular member with the right to vote. In 2014 IPOPI has 49 national organizations- members from every continent of the Earth, which are representing PID patients around the world (http://www.ipopi.org/index.php?page=member-organisations ).
In order to achieve its goals, SPwPID is making reachable general information about primary/congenital immunodeficiency's, first of all to the sensitive groups of the population (parents with family PID history, all grown-ups suspected for PID), and also to general and competent public to the end that continuously enhance information and awareness about this congenital disorder of the immune system.
We are collecting information about children and adults from Serbia who are already in some kind of treatment for PID. We want to research and analyze how often PID shows in Serbia and to make ground for National register of PID patients (it would be all of the PID patients in one place, doctors and the institutions for treating PID, diagnostic methods and methods for treating PID, clinical protocols and guides for treating acute and chronically conditions of the persons with PID, as well as the medical preparations and devices used in that purpose).
Also, SPwPID wants to stimulate discovering and diagnostic of PID (first of all, at young children) and to make influence on decreasing of mortality and consequences to the health and quality of life of these persons. SPwPID is open to make contacts with everyone who is interested to contribute these goals.
In order to accomplish their rights for the appropriate health protection and treatment, SPwPID is giving support to PID persons, and in front of the authorities and local service, SPwPID is representing their rights and human relation to them.
In the field of education, SPwPID is moving programs of PID popularization, in general public but also among doctors (pediatric, aerologist and immunologist) in order to improve terms for early diagnostic, treating and social establishing (mental hygiene of PID patients and their families).
Considering that treating most of the primary/congenital immunodeficiency's involve use of blood derivates (intravenous or subcutaneous immunoglobulin), SPwPID is taking care that every patient must be treat with safe preparations, produced under the EMEA standards (European Medicines Agency) and actual practice in the field of PID.
In order to continuously progress in getting knowledge and information's about PID, SPwPID is always making contacts, developing and growing cooperation with similar organizations in the country and also in the region and the world, involving in the international organizations with similar goals in order to become more effective in protecting rights and in satisfying needs of PID patients.