Open by design
Transparency
Rett Syndrome Europe is a volunteer-led non-profit. Every donation, every grant and every partnership is publicly accounted for on this page. Here you will find our governing documents, our annual accounts, the funders that support our work and the policies that frame how we operate.
1 · Governance
How RSE is governed.
RSE is a Luxembourg non-profit association (association sans but lucratif), registered in 2006 with the Luxembourg Business Registers under file number F1819. We are governed by an Executive Board elected by the General Assembly of member associations.
Statutes
The current statutes of Rett Syndrome Europe were approved in 2018. They define the purpose of the association, the rights and obligations of member associations, the composition and powers of the General Assembly and the Executive Board, and the procedure for amending the statutes.
Download the RSE Statutes (2018, PDF)
Board of Directors
RSE is run by an Executive Board elected by the General Assembly. Board members serve in a voluntary capacity, each representing their national member association.
- Pedro Rocha — President — Spain
- Burak Temiz — Treasurer — Turkey
- Gvantsa Kvantaliani — Secretary — Georgia
- Bojana Milanov — Board member — Serbia
- Mariëlle van den Berg — Board member — Netherlands
- Rob Adamek — Board member — United Kingdom
- Sergey Dmitriev — Board member — Greece
General Assembly
The General Assembly is the sovereign body of RSE. It brings together representatives from all member associations once a year to approve the annual accounts and activity report, set strategic priorities, and elect the Executive Board. Minutes, activity reports and financial reports of recent General Assemblies will be published below.
Coming soon — to be published here.
2 · Financials
Where the money comes from and where it goes.
Coming soon.
Annual accounts
Coming soon — to be published here.
Annual activity reports
Coming soon.
Income breakdown
Coming soon.
Expense breakdown
Coming soon.
3 · Funders & partners
Who supports our work.
Coming soon.
Public & institutional grants
Coming soon.
Corporate & pharmaceutical partners
Coming soon.
Independence statement
Coming soon.
4 · Compliance
Policies and legal status.
RSE operates as a Luxembourg non-profit association, with publicly registered statutes and a small set of internal policies that frame how we work with funders, partners, families and personal data.
- Legal registration: Luxembourg non-profit association (asbl), registered 15 June 2006 with the Luxembourg Business Registers (file number F1819). Headquartered at 121 Route de Bascharage, 4513 Niederkorn, Luxembourg.
- Tax status: Coming soon.
- Privacy & GDPR: see our Privacy Policy.
- Code of conduct: Coming soon.
- Conflict of interest policy: Coming soon.
Questions about our governance, accounts or partnerships? Contact us — we are happy to provide more detail.