Foundation of Borys the Hero
Budget
€16,798
EP Access
0
accredited persons
Staff
1
0.25 FTE
EU Grants
None
Mission & 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.
EU Legislative Interests
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 The Biotech Act Strategy for European Life Sciences
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.
Interests Represented
Does not represent commercial interests
Member Of
EURORDIS - Rare Diseases Europe - Member Organization and Member of the Board of Directors.
Organisation Members
EURORDIS - Rare Diseases Europe - https://www.eurordis.org/
Connected Legislation
Commissioner Meetings
No recorded meetings with EU commissioners.