Public organization “Ukrainian Pituitary Foundation” (PO “UPF”)
In 2018, several patients from Kiev and Kharkov with the diagnosis of acromegaly and pituitary gigantism decided to create their own organization in order to unite the same patients in Ukraine and begin the struggle to uphold the legal rights of orphan patients in Ukraine.
In 2019, their efforts finally took on real forms, and the first acromegaly patient organization appeared in Ukraine. The Public Organization “Ukrainian Pituitary Foundation” (PO “UPF”) was officially registered on July 21, and began its work.
The organization’s president is Andrei Putnikov, a patient with a diagnosis of acromegaly, a microbiologist and a researcher at Taras Shevtchenko National University of Kyiv, an active public person. His associates are Natalya Zhuchenko and Irina Kondratenko.
Natalya Zhuchenko has the diagnosis acromegaly as well. She is a teacher at a music school. Natalia works actively with patients in the Kharkiv region and is a member of the board of the Public Foundation “UPF”.
Although Irina Kondratenko is not an acromegaly patient, she knows about acromegaly because her son Ivan has struggled with this diagnosis for many years. Unfortunately, the young man has died in 2019. Nevertheless, Irina found continues the work. She is a member of the board of the organization.
The main objective of the public organization “Ukrainian Pituitary Foundation” is to unite patients with pituitary pathologies, providing them with information about the forms and methods of treatment, ways to improve the quality of life and advisory legal support for patients.
PO “UPF” protects the rights and legitimates interests of patients with pituitary pathology, helps in solving the problems of their treatment, provides advisory assistance in interacting with local authorities.
Today in Ukraine, patients face a great number of problems; the main ones are late diagnosis, lack of needed treatment, the impossibility of obtaining modern drugs and treatment methods, as they are quite expensive, as well as problems with socialization and the lack of psychological assistance and patient support.
The primary tasks of members of the organization is directed on assistance in creating the Patient Register with pituitary pathologies, development of regional programmes for treatment of acromegaly, as well as the state program to ensure free medical treatment, promotion of the establishment of multidisciplinary diagnosis centres and treatment of pituitary pathologies.
To solve all the problems PO”UPF” actively interacts with public authorities, Ministry of Health in Ukraine, local authorities, different patient organizations of the Public Union “Orphan Diseases of Ukraine”, charity foundations, research institutes and clinics.
In 2019, the organization became a member of the WAPO (World Alliance of Pituitary Organizations) and began to participate actively in joint activities of the organizations of patients with pituitary pathologies from around the planet.
To ensure patient access to innovative technologies and treatment under limited budget in the country, Ukrainian Pituitary Foundation began its cooperation with the organization “Ukrainian Agency for the Assessment of Health Protection Technologies.”
The organization is active in all regions. In Kiev, Kharkov, Uzhgorod, Ivano-Frankivsk, Odessa, and the Dnieper there were round tables on regional programs, meetings with specialized medical experts, representatives of local authorities. However, the most important thing is the unification and support of patients, many of whom simply closed themselves and gave up.
On March 3, 2020, the First All-Ukrainian Forum of Patients with pituitary pathologies took place. As a part of the forum, a round table on the topic “How much costs a treatment for a patient with acromegaly and where to get the money for it” was held in the press center of the Information Agency “Interfax-Ukraine”, as well as the Patient’s School took place where a geneticist, a psychologist and a lawyer were involved.
The Public organization “Ukrainian Pituitary Foundation” is actively involved in ‘International Day of Orphan Diseases’ and ‘International Acromegaly Awareness Day’ conferences, photo exhibitions, conferences of endocrinologists and neurosurgeons as well as patient forums.
In order to expand knowledge and public awareness of diseases caused by pituitary pathologies, we created an organization page on Facebook “Ukrainian Pituitary Foundation”:
https://www.facebook.com/ugf.acromegalia2019/, and for psychosocial support and communication of patients – a closed group “Forum of GO” Ukrainian Pituitary Foundation” and a group in Viber.
We have a UPF channel on YouTube to raise awareness of the hallmarks and symptoms of pituitary disorders among the population and doctors, where the video about the orphan (rare) disease acromegaly was uploaded.
We will continue our work and struggle for the lives of our patients, because our motto is “A disease crippled our bodies, but it didn’t cripple our hearts and souls!”Leave a reply