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The Council of European Rare Disease Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.
Funding
The 50 Most Generous Philanthropists
To measure what donors have given or pledged over the past five years, a team of reporters spends months conducting interviews and scouring databases, news reports, and foundation filings. For consistency, we count pledges in full at the time they’re … Read More
Posted in Article of the week, Funding, Fundraising, Resources
Tagged How much do you need?
Paying to fundraise?
While many, if not most, Community Patient Organisations cannot afford to pay to fundraise, there are a number of services out there who, for relatively small amounts, offer connections with funders (lists), classes on how to best fundraise (write a … Read More
Posted in Funding, Fundraising
Online fundraising
Published online 27 June 2011 | Nature | doi:10.1038/news.2011.387 News Rare-disease studies seek online giving Website invites micro-donations for unusual illnesses. Amber Dance The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes … Read More
Posted in Funding, Fundraising
Cross border tax relief
In a landmark decision, the European Court of Justice ruled on 27 January 2009 that national restrictions on tax relief for cross border donations to charities in other European Union Member States are unlawful. This decision has significant implications for all charities throughout the EU. Read More
Posted in Cross border tax relief, Funding
Tagged charities, cross border tax relief, Europe, tax
Financial Support by Commercial Companies
EURORDIS has written the paper “Eurordis Policy on financial support by Commercial Companies” to define a set of principles, which can help other patient organisations to define their own rules and principles. Donwload “Eurordis Policy on financial support by Commercial … Read More
Code of Good Practice
The valuable and serious work of patients’ groups and the service they provide needs to be recognised, valued and supported. However, most groups are struggling to find sufficient, diversified resources, to fulfil their mission and objectives and remain independent, whether … Read More
Posted in Code of Good Practice, Funding
Tagged good practices, patient groups
Transparency
Eurordis believes that transparency cannot be restricted to the narrow issue of transparency on funding – a necessary but not sufficient condition of transparency. Read the Eurordis position paper on Transparency: Eurordis_position_transparency_oct05
Posted in Funding, Transparency
Tagged funding, patient organisations, transparency
Fundraising
A ‘donation‘ is made to an organization (or a specific activity such as a conference) with an objective in mind – sometimes simply to get a good image. This is critical to understand when we approach a potential sponsor – … Read More
Posted in Funding, Fundraising
Tagged fundraising for not for profit organisations
Financial management
All organisations need money. Alongside staff, money is the one thing that takes up most management time. Good financial management involves the following four building blocks: 1. KEEPING RECORDS The foundations of all accounting are basic records that describe your … Read More
Posted in Financial management, Funding
Tagged financial management, not for profit, patient organisation
Framework Program 7 (FP7)
The objective of health research under FP7 is to improve the health of European citizens and boost the competitiveness of health-related industries and businesses, as well as address global health issues. The Health theme is a major theme of the … Read More
Posted in European Commission Call for proposals, Funding
Tagged European commission, FP7, funding, Research