The Association
In recent years we have sought aid and donations by organizing social events that have allowed people to socialize and at the same time learn about the serious problems that rare diseases can cause. It is our intention to continue along this line.
To stay informed about upcoming events, visit the dedicated page through which you can also register for upcoming events or subscribe to the site (via the login page) to receive the newsletter.
The Initiatives
The ability to intervene is linked to the financial resources and the number of volunteers, every small or large donation and every volunteer is important. To learn more about our activities go to the INITIATIVES page. To support our initiatives you can make a donation through the “My Gift” website.
The events
In recent years we have sought aid and donations by organizing social events that have allowed people to socialize and at the same time learn about the serious problems that rare diseases can cause. It is our intention to continue along this line. To stay informed about upcoming events, visit the dedicated page through which you can also register for upcoming events or subscribe to the site (via the login page) to receive the newsletter.
Thank you
“A future for Katia”
Ekatherina is a baby girl who has born on 16th August 2009, She is afflicted by a genetic inflammatory disease, called “Criopirinopatia” due to the mutation F523L of NLRP3 gene. This condition causes chronic inflammatory condition characterized by anemia, urticarial rash, arthro-myalgia, headache and possible development of sensorineural deafness. Ekatherina needs continuative therapies and two medicines that are currently on Europe Market and They are the IL-1 receptor antagonist (Anakinra) or the IL-1beta monoclonal antibody (Canakinumab). In the case of Ekatherina, a short therapeutic cycle has caused a fast control of symptomatology and an evident improving the patient’s quality of life. Unfortunately the mentioned medicines aren’t available in Ukraine. This situation causes a persistence of patient inflammatory condition and It puts her at risk in the short and long time (neuro-sensory deafness, mental retardation, renal amyloidosisIris Onlus Association would like buy the medicines (Kineret – p.a. Anakindra) that could heal Ekatherina. Iris Onlus Association asks you to became protagonist of this dream together, presenting to Ekatherina a possibility and supporting, in order to your possibilities, the supply of this medicines, important a lot for Stephanenko family.
Tank you for attention angd good trip I wish you a good trip on the website.