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Alliance for Pulmonary Hypertension IVZW Internationale Vereniging Zonder Winstoogmerk

Acronym: AfPH

General Information

Identification Code: 463396153004-31
Website: [object Object]
Entity Form: Not for profit
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 2/26/2024
EP Accredited Number: 0

Mission & Interests

Goals: The Alliance for Pulmonary Hypertension's mission is the sharing of knowledge and expertise about pulmonary hypertension, a severe lung condition, some forms of which are rare and life threatening. The organisation has set up a Pulmonary Hypertension Knowledge Sharing Platform, a dedicated hub for information of pulmonary hypertension. This platform features is a digital library, with over 500 resources in different languages and formats, a news portal, consistently updated with news in the pulmonary hypertension field, and a calendar of the main international scientific events. The Alliance for Pulmonary Hypertension also organises educational live events (six in 2023), the slide and recordings of which are also present in the platform.
Interests Represented: Does not represent commercial interests
Interests:
  • Digital economy and society
  • Education and training
  • Public health
Levels of Interest:
  • global

Activities

Main EU Legislative Proposals: Rare diseases, organ donation and transplant, European Medicines Agency activities, European Parliament Lung Health Group, European reference Network on Rare Lung Diseases (ERN-LUNG)
Communication Activities: Reporting of any EU activities that are directly or indirectly to pulmonary hypertension: rare disease, organ donation and transplant, new marketing authorisations from EMA
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Washingtonstraat 40
Post Code: 1050
City: Elsene
Country: BELGIUM
Phone: [object Object]

EU Office

Address: Washingtonstraat 40
Post Code: 1050
City: Elsene
Country: BELGIUM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]

Membership Information

Members10 Percent: 1
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 0
Members: 1
Members F T E: 0.10000000149011612

Structure

Structure Type: Structure
Is Member Of: ERN-LUNG Patient Advisory Group European Lung Foundation Pulmonary Hypertension Patient Advisory Group World Symposium on Pulmonary Hypertension 2024 Task Force n° 1 on Patient Perspectives PHA Europe European Society for Organ Transplant Extended Education Committee European Society of Cardiology Patient Forum
Organisation Members: European Lung Foundation Patient Organisation Network European Society for Organ Transplant- European Transplant Patient Organisation Alliance - ESOT-ETPO Alliance