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ZVEZA EUROPSO

Acronym: EUROPSO

General Information

Identification Code: 447807347568-16
Website: [object Object]
Entity Form: Non-Governmental Organization
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 9/7/2022
Last Update: 9/19/2023
EP Accredited Number: 0

Mission & Interests

Goals: EUROPSO is a patient umbrella organisation with an overall goal to achieve better conditions for early diagnostics, access to treatment and improving the quality of life for all patients suffering from psoriasis in Europe. In order to achieve this goal, EUROPSO organises activities to educate and raise awareness of this condition, helping social and economic integration of psoriasis/psoriasis arthritis patients and dispelling prejudices and all other forms of discrimination against psoriasis/psoriasis arthritis patients. EUROPSO works with other organisations which share the same or similar goal. In order to reach a wider group of decision makers on the EU level, one of EUROPSO’s aims is obtaining recognition from the European Union and other European international institutions.
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Budget
  • Communication
  • Education and training
  • Food safety
  • Humanitarian aid and civil protection
  • Institutional affairs
  • International co-operation and development
  • Public health
  • Research and innovation
  • Youth
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: We operate in the health sector for the better recognition of psoriasis and arthritis psoriasis within the existing health policies. EUROPSO activities are aimed at protecting the rights of patients, to ensure equal access to treatment and the right therapeutic path. EUROPSO would like to represent the psoriasis patient voice within the “EU4Health Programme” (the Regulation (EU) 2021/522 of the European Parliament and of the Council of 24 March 2021 establishing a Programme for the Union’s action in the field of health (‘EU4Health Programme’) for the period 2021-2027, and repealing Regulation (EU) No 282/2014 (Text with EEA relevance)).
Communication Activities: In a recently conducted EUROPSO Observatory project, EUROPSO found out that the number of clinical trials across Europe is in slow but constant decline in recent years. In addition, patients lack information about the clinical trials that are on-going in their country, affecting their possibilities to actively participate in any trial or contribute to it in a meaningful way, giving a unique patient perspective. EUROPSO would like to present these findings at the EU level, initiating an open discussion with representatives from different political parties and EU countries. The activities that could help in fostering conversations with the Members of the EU Parliament and other decision makers are the following: - organising or participating in meetings, conferences or events related to psoriasis - participating in consultations or hearings regarding patient involvement or giving patient perspective to policies related to improving the quality of life of psoriasis patients or in line with any of the goals from EUROPSO’s Constitution - organising communication campaigns, platforms, networks or grassroots initiatives to raise awareness of psoriasis, psoriatic arthritis and challenges that patients and their families face in relation to this disease - preparing or commissioning policy and position papers, amendments, opinion polls, surveys, etc. EUROPSO plans endeavour a patronage from different MEPs in order to organise a panel discussion in the EU Parliament in May 2023, during the European Psoriasis Week. There will be educational materials developed around and for this event, helping all participating sides prepare for the discussion. There will be posters, press releases, patient information leaflets, a report on the EUROPSO OBSERVATORY Project key findings and recommendations for the policy makers and various other materials that would support the event.
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Glavni trg 10
Post Code: 3313
City: Polzela
Country: SLOVENIA
Phone: [object Object]

EU Office

Address: Glavni trg 10
Post Code: 3313
City: Polzela
Country: SLOVENIA
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: EUROPSO will be continually fundraising for these activities.

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 1
Members75 Percent: 0
Members: 8
Members F T E: 7.5
Info Members: EUROPSO did not participated in any of the aforementioned EU-level activities until now. All EUROPSO related work is being carried out by volunteers, members of the Board.

Structure

Structure Type: Structure
Is Member Of: https://ifpa-pso.com/ https://www.eu-patient.eu/
Organisation Members: https://psoriasis-hilfe.at/organisation/ https://www.gipso.info/ https://www.psoriasis-vl.be/dru http://drustvo-psorijaticara.hr/ https://spae.cz/ https://psoriasis.dk/ http://www.epsol.ee/ https://psori.fi/ https://francepsoriasis.org/ https://www.psoriasis-bund.de/ http://epidermia.gr/ https://www.apiafco.org/en/home-2/ https://psoriasispatientennederland.nl/ http://www.hudportalen.no/ https://psoportugal.pt/ https://psorijaza.rs/ https://spaa-sr.webnode.sk/o-nas/ https://drustvo-psoriatikov.si/ https://www.accionpsoriasis.org/ https://www.spvg.ch/de/