First patient meeting

The “First Patient Meeting” began at the Lviv Regional State Administration, where a solemn signing of the Memorandum of Cooperation between the Public Organization “Pulmonary Hypertension Ukrainian Rare Disease Association” (PHURDA) and the Norwegian Association of Pulmonary Hypertension (PHA Norway) took place.

In his welcome speech, Rostyslav Zamlynskyi noted the importance of the joint purposeful activity of representatives of the authorities, international organizations, public activists, scientists and specialists in improving the quality and length of life of patients with such a serious disease as pulmonary hypertension.

An extremely important area of work of the patient organization is the establishment of international cooperation with the aim of joining efforts to solve the problems of patients with pulmonary hypertension, sharing experience, developing programs for diagnosis, treatment, rehabilitation and social adaptation of patients. A significant step in this direction is the signing of the Memorandum of cooperation between PHURDA and PHA Norway. It was the reason why Hall Skara, a chair of PHA Norway and a staff member of PHA Europe visited Lviv. “The disease has no borders, and most points regarding the treatment of PH patients are the same for Ukraine and Norway. Our countries have a long history of cooperation in various directions at the state level, and the signing of the Memorandum will be of exceptional importance for expanding cooperation at the level of patients and the public,” Hall Skara emphasized.

The event continued with an unofficial part at the NTON Hotel. All participants moved to the conference hall, where the head of PHURDA, Oksana Kulish, spoke about the creation and activities of the CF “Sister Dalila” and PHURDA. Then the floor was given to the head of the PHA norway Hall Skara, who presented a story about his life with pulmonary hypertension.

Hall Skara ignited the audience with the main message: “life is one, and it should be lived properly, and not stop, fight.” Since Hall Skara has been actively involved in sports since his youth, after the diagnosis he chose backgammon as his sport, later becoming the Champion of Norway. He realized that he can only help himself and structured his life by adding seven points to it:

  • Avoid stress;
  • Spend time with family and friends;
  • Appreciate every moment;
  • Take daily walks, do breathing exercises;
  • Have a hobby, a goal;
  • Get enough sleep, eat healthy food;
  • Have systematic visits to the doctor.

Andrii Hulei presented information about PHURDA’s activities and plans for the future, and Uliana Malofii presented to the audience the “Cork for Life” Campaign, which is aimed at the mass collection of plastic caps to save the lives of patients with pulmonary hypertension, namely the purchase of medicines and medical equipment.

Later, the information storm turned into a joint photo and dinner, during which commemorative gifts were presented to PH patients and their family members:

  • Nomination “Best PH photo-2016!” – Khrystynka Makarchuk (5 years old), who took part in the European photo contest EURORDIS, taking 18th place among 400 participants;
  • Nomination “Population of the problem of pulmonary hypertension” – Artemko Matkovskyi (5 years old) and Oksana Melnyk;
  • The most active volunteer – Tetyana Fedosiuk.
  • найактивніший волонтер – Тетяна Федосюк.

There was a competition for knowledge of Christmas carols, and everyone who took part in it received commemorative books from Lviv Regional State Administration for adults and children as a gift. Singer Joshua Pratt (participant of “Voice of the Country”) ignited everyone’s mood.

The “First patient meeting” event brought together patients from different parts of Ukraine, patient organizations, the authorities of the Lviv region, doctors, entrepreneurs, public figures, volunteers in order to draw attention of the state and society in particular, to the problem of the disease pulmonary hypertension and rights patients for life.

On the Old New Year, amazing, fabulous and bright events happen. The event “First Patient Meeting” and the signing of a Memorandum with the Norwegian Association of Pulmonary Hypertension can be considered as such. Hospitable Lviv welcomed pulmonary hypertension patients together with their family members, friends of the Association, the authorities, and television personalities. It was no coincidence that the meeting took place on the first day of the New Year according to the old style. The management of the region, the organizers of the event sincerely congratulated on a good start and expressed hope that the coming year will bring positive and good things to each of us. We became stronger by uniting in the fight against the disease, braver by overcoming certain obstacles on our way and more confident by achieving our goals.

The meeting is incredible, warm, and sincere. Thank you to each of you. To my friends for motivating me to act; to the local authorities for not being indifferent and supporting us in our attempts to change the country for the bette; to the doctors for their work, compassion and consolation; to the volunteers and friends for their reliable shoulder. I am sure this meeting and communication will give us all new ideas and suggest ways to solve them!

Our Association is based “by hope”, and it is clear that for a better result we all need to unite!

“The first patient meeting” is organized by the Pulmonary Hypertension Ukrainian Rare Disease Association-PHURDA, CF “Sister Dalila” with the support of PHA Europe, LRSA, Department of Internal and Information Policy, Lviv City Council, LCCCSFCY.

Our friends helped in the preparation of the holiday. TM “Galicia” (T.B. Fruit) is a juicy and sweet partner of our event, they entertained the children and gave certificates to the “Children’s Planet”, Hotel “NTON hospitably met us and organized a welcome dinner, goodies were provided by “Bratvantka”, “Miracle Island” helped to buy soft toys, “Jurashki” generously greeted us, Andrian Gutnyk gave us certificates for “Aquapark Beach”, a special guest was Artisto – performer and author of the “Euromaidan” anthem, singer Joshua Pratt – a participant in the TV show “Voice of the Country” gave a concert. Technical and musical support was provided by Oleksandr Yuganiuk and Ruslan Kunanets – students of the LSSZSH No. 81, Rostyslav Loza and Andrii Kubiak took photographs of the event, the TV channel Pravda Tut also supported the event in the media. Thank you to “AMIK Ukraine”, “Del Pesto” date restaurant, “Invasport”, PO SAMI, GF “Narodna Samooborona”, LOCSSSDM, Lviv Regional Clinical Hospital, “VAM” shopping center, advertising company “EXLIBRIS”.

Oksana Kulish, head of the СF “Sister Dalila”