Новини

The Pulmonary Hypertension Association of Europe reports and warns about the COVID-19 coronavirus
At the office of CF “Sister Dalila” there was held a workshop of making a leaflet
The Ukrainian Medical Society in Lviv became a platform for communication on orphan diseases with the active assistance of the head of the medical society Oleh Duda.
The meeting of the Commission for Social Protection of the Population and ATO Participants at the Lviv Regional State Administration was held. During the meeting, we, the PH Urda representatives, together with members of the Commission, heard a report from the LODA Department of Social Protection for 2019.
On Rare Disease Day - February 29th The Orphan Bell movement got its own logo

About us

 CHARITY FOUNDATION was created to help children and adults with rare diseases -Pulmonary Hypertension. It extends its activity to the whole territory of Ukraine.


I. MISSION:

Assistance in providing patients with pulmonary hypertension (children and adults) with information, psychological, legal, medical assistance in the form of medicines and medical equipment, information support before and after transplantation of the heart, lungs, heart-lung complex

II. TASK:

1. Development of organ transplantation system in Ukraine.

2. Early diagnosis of pulmonary hypertension, overcoming information barrier among the population of Ukraine about diseases - pulmonary hypertension.

3. Patient access to uninterrupted, free, 100% lifetime treatment with oxygen therapy.

4. Patients' access to rehabilitation: work with a psychologist, rehabilitologist, nutritionist.

5. Registration of new medicines for full access of patients to treatment in Ukraine.

6. Establishing of cross-border cooperation to improve the quality of life of patients in Ukraine.

III. VALUES:

Among the values ​​that are the basisof the activity of LCCF "Sister Dalila"are the right to life and health of each person.

IV. DIRECTIONS OF WORK:

1. Provision of information, legal assistance to patients.

2. Advocacy for patients 'rights in public authorities, local self-government (affirmation of patients' right to 100% provision of treatment before and after transplantation).

3. Provision of charitable assistance to patients for treatment, expenses for stay in treatment, rendering assistance in the form of medicines, medical equipment (collecting charitable donations at the Ukrainian Charity Exchange as Aid Operator).

4. Rehabilitation for patients (holding psychological trainings with the participation of patients, working with a rehabilitologist, a nutritionist).

5. Cross-border cooperation (Memorandum of cooperation with the Norwegian Association of Pulmonary Hypertension - exchange of experience of medical specialists of Ukraine-Norway).

6. Development of organ transplantation system in Ukraine.

7. Implementation of projects and educational campaigns (Campaign "Cork for Life", Project "Butterfly in Blue", Rehabilitation Program for Patients with Pulmonary Hypertension, Project "For Coffee", Project "Early Diagnosis of Pulmonary Hypertension").