About the Association

The Association of Patients with Pulmonary Hypertension was founded in 2014. It is an independent, non-governmental organisation without a patrimonial purpose, representing patients at a national level.

The primary objective of the Association is to represent patients with pulmonary hypertension in their interactions with public authorities and other organisations, ensuring their access to diagnosis, adequate treatment, specialised medical care, social protection, and integration into society.

The Association’s main objectives include supporting, educating, and informing patients with pulmonary hypertension, as well as protecting their rights and interests.

The association is actively involved in supporting, informing, and training its members by:

  • Organising meetings between patients, medical specialists, nutritionists, and psychologists.
  • Organising conferences and information congresses.
  • Publishing and distributing informative materials.
  • Awarding scholarships.
  • Providing material assistance for diagnosis and treatment, at the request of members, in justified cases.

The association has a General Assembly, which is the leading body composed of all members, regardless of their status.

The General Assembly has the following competencies:

  • It establishes the strategy and general objectives of the Association.
  • Approves the budget of revenues and expenditures, as well as the balance sheet.
  • Elects and revokes members of the Board of Directors.
  • Elects and revokes the Censors Commission.
  • Approves the establishment of any subsidiaries.
  • Approves the amendment of the articles of association and the statute.
  • Approves affiliation/association with other non-governmental organisations working to protect the property and interests of the parties.

All members of the Association have the right to vote.

 

National and international affiliations

The Association is a member of the National Alliance of Rare Diseases and the Coalition of Patient Organisations with Chronic Diseases in Romania (COPAC).

Internationally, the Association of Patients with Pulmonary Hypertension is a member of PHA Europe (the European Association of Patients with Pulmonary Hypertension).

Bogdan Burduja, president of the Romanian Association, is also a member of the PHA Europe’s board.