In January 2018, the Ukrainian NMO “Rare Immune Diseases” (RID) appealed to IPOPI to support the project “Information and legal support of persons living with primary immunodeficiencies“. With help from IPOPIs’ NMO support programme, RID carried out this project in the beginning of 2019, with various efforts aimed at improving the Ukrainian health care system for patients with PIDs. The great work of RID is an example of the many ways NMOs can use the support programme to improve the situation for PID patients in their respective countries.

The main tasks of the project were to create a consistent policy aimed at uninterrupted access to vital medicines; to reduce mortality among young PID patients; to spread legal information to young PID patients about their rights in the field of health care and to obtain legal support for NMO RID on the issue of state procurement of unregistered medicines in Ukraine (Kineret) under the new mechanism used in Europe.

The members of RID, together with lawyer Savelovoy Julia, introduced a number of actions that led to the successful implementation of this project. One of these was the preparation of various letter requests to the acting Minister of Health, Ulyana Suprun. These letter requests concerned financial and legal aspects related to medical products (medicines, laboratory equipment…).

This was followed by letters of appeal to the Director of the State Expert Center Dumenko T.M. concerning the registration of the medical drug Gammanorm (3 letters), to the Director of the Department of Health of Kyiv on the City Target Complex Program “Health of Kiev citizens”, to the Chief Expert on Immunology of the Kyiv regarding the City Target Complex Program “Health of Kiev citizens” and to the Department of Health of the Kyiv Oblast State Administration for the treatment of PID patients in the Kyiv region.

Beyond these various letter requests RID also offered a four hour long legal training seminar with the theme “Methods of protecting the rights of patients in the field of health care” for PID patients and their family members. This much welcomed meeting offered common knowledge of rights and legal support to the participants, something that can come very handy for patients who do not know what they are entitled to.

In addition to the letter requests and the legal training seminar RID also asked their lawyer to put together a human rights booklet in the sphere of public health. This booklet includes a list of references to international legal documents regulating relations in the sphere of health protection, a list of general rights of patients in the sphere of health protection under the legislation of Ukraine, special rights of patients with rare diseases and organ patients in the field of health protection, special rights of organ patients in the field of health protection, forms of protection of rights, contacts of organisations and institutions that promote the protection of human rights in the field of health protection and samples of documents.

This project is a great example of how NMOs with some creativity can come up with ideas on how to combine efforts on different fronts and reach the goals of their projects. Hopefully many more NMOs will be inspired by the work of RID Ukraine.