Foundation of Borys the Hero
Acronym: FBB
General Information
Identification Code: 005426136369-56
Website: [object Object]
Entity Form: foundation
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 10/28/2019
Last Update: 2/13/2024
EP Accredited Number: 0
Mission & Interests
Goals: 1. Development of social activity in the field of activities for people and families affected by rare diseases, with particular emphasis on leukodystrophy.
2. Building a conscious and inclusive society, as well as social awareness, in particular on the challenges and needs of people and families affected by rare diseases, as well raising awareness about available and experimental methods of diagnosis, treatment, rehabilitation, education and professional activity of people and families affected by rare diseases.
3. Supporting solutions and systemic activity devoted to rare diseases as well as issues of disability and people with disabilities, as well as issues related to social inclusion, counteracting discrimination and preventing unequal treatment.
Interests Represented: Does not represent commercial interests
Interests:
- Public health
Levels of Interest:
- sub-national
Activities
Main EU Legislative Proposals: Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL laying down Union procedures for the authorisation and supervision of medicinal products for human use and establishing rules governing the European Medicines Agency, amending Regulation (EC) No 1394/2007 and Regulation (EU) No 536/2014 and repealing Regulation (EC) No 726/2004, Regulation (EC) No 141/2000 and Regulation (EC) No 1901/2006
Proposal for a DIRECTIVE OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL on the Union code relating to medicinal products for human use, and repealing Directive 2001/83/EC and Directive 2009/35/EC
Communication Activities: Cooperation within and under the umbrella organisation, namely EURORDIS - Rare Diseases Europe as one of the person involved in internal discussions and meetings.
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: Av. Jana Pawla II 3A/126
Post Code: 80-462
City: Gdansk
Country: POLAND
Phone: [object Object]
EU Office
Address: Av. Jana Pawla II 3A/126
Post Code: 80-462
City: Gdansk
Country: POLAND
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 0
Members25 Percent: 1
Members50 Percent: 0
Members75 Percent: 0
Members: 1
Members F T E: 0.25
Structure
Structure Type: Structure
Is Member Of: EURORDIS - Rare Diseases Europe - https://www.eurordis.org/
Organisation Members: EURORDIS - Rare Diseases Europe - Member Organization and Member of the Board of Directors.