Eurordis RareTogether Knowledge Base

The 50 Most Generous Philanthropists

admin — Fri, 09 Dec 2011 16:45:01 +0000

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 announced, discounting only those that are formally revoked. If a gift is in stock, we value it at the time it’s announced. To avoid double-counting, the survey counts gifts to foundations at the time they’re given and not when the money flows out of foundations.

Friday December 9, 2011, Bloomberg BusinessWeek. Go to http://www.businessweek.com/interactive_reports/philanthropy_individual.html

Some recommendations for websites & templates

admin — Wed, 02 Nov 2011 10:15:52 +0000

OIFE is a European Federation with 18 European and 6 international member organisations. We were founded in 1993 and our first President set up a website many years ago (www.oife.org) and is managing it as volunteer webmaster.

Now our Board has decided that we should try to improve and modernize our website – if necessary with professional help.

We found a young web designer who created a first prototype for a possible new website – the minimum costs for the basic website would be around 3000 € – afterwards we would have to do a lot of work to fill the content management system ourselves to save more expenses…..

Should we go (and pay!) for the professional solution or stay with the old webmaster and website and try for some improvements?

How do other European organisations deal with their websites?
- do you have a professional who built and manages the website or “do-it-yourselves”?
- how much money in relation to your yearly budget do you spend for the website management?
- would you please tell us how much your basic website cost?

REPLIES:

Dear everyone,

Actually I think that the most important tool European associations have is the internet. In my opinion, paying for a professional is the easiest way to obtain a good presence in the web. As long as the money is available and all parties agree, this seems to be a good solution – even if there’s still a lot you have to do on your own, like fill in contents.

Geske, Germany, http://www.ichthyose.eu/

Dear All,

Since we started with hardly any funding we have made a simple Joomla website. Some of our volunteers are learning to work with it in practice.
Of course if we would have more funding we would be able to do better, but I am very satisfied with what we have.
The costs were approx. 600 euros.
The system is so easy that many volunteers can help and that is also very good for our team-building.
I would love to know more, however from a cost/revenue point of view I am very satisfied.

Marieke, NephcEUrope, www.nephcEurope.eu

Hi,

Like all of you, I have had to deal with problems of the website.

It is now considered “normal” to change a website every five years or so.

I would go with a professional, it is worth the money, BUT make sure the “source” belongs to you. If, one day, you decide to work with somebody else, you need to ‘own’ the site and the design. I have recently experienced this with our blog-forum which simply “disappeared” with its designer ….

Sylvie, http://www.porphyries-patients.org/

IPOPI would echo all that is said – we are working on renewal of our site right now and we went to a competitive tender – amazing the deals that are available right now! So, yes to a professional … !! The new IPOPI site – which will be ‘pretty amazing’ will cost around €6,000 max. We regard the website as important and worth that investment …… http://www.ipopi.org/

David

Hi all

European Gaucher Alliance have chosen a professional web-designer. As our secretary also works for the UK association, she will take care of the updating we have chosen to use the same web-designer. We have just employed a UK company to design our site, and the cost is approximately £6,000.

Regards, Anne-Grethe, Gaucher Foreningen i Danmark, http://www.gaucherforeningen.dk/, http://www.gaucher.org.uk/

Hi everyone,

We’ve replaced our old website with Joomla.

Joomla is extremely open and allows you to produce content very easily and quickly without necessarily knowing HTML.

You might request help of a web designer for the initial design.

Anyhow you can find many templates on the net you can use as a basis for your website and adapt with your logos and colors.

You can share the production of content with members of your association with publication control.

Joomla comes with multilingual features and many many others.

We put in place an online fundraising tool using a Paypal plug-in for security reasons.

Our website is mainly in French but I have translated 25% of the pages which might be relevant in English for foreign visitors. http://www.afsondine.org

Best regards, Phil

Dear all,

For our website (www.ichthyose.eu) I use a content management system (CMS) called webEdition, which is now available for free.

For the Swiss-Ichthysis website I used Joomla at the beginning, but I switched to webEdition when it became free, because webEdition is easier to use.

The advantage of Joomla are the vast amounts of templates and designs.

Kind regards, Annette

Dear friends,

Our experience in terms of website is limited but we have plans for a new design. Our current website was developed some four years ago by a medical doctor, a researcher on Haemochromatosis. Little has been done since then. We would like to use a professional for the new design but we are “poor” and for the time being, we have other priorities. This is why we are very interested by the experiences some of you have with the Joomla software.

Best regards, Françoise Courtois, EFAPH, http://efaph.eu/

Hello Everybody,

FESCA (Federation of European Scleroderma Associations) works with a professional!

Catherine, http://www.fesca-scleroderma.eu/

**Another interesting idea came from Marieke of nephcEurope.eu about getting one designer to design various groups’ websites which then may lower the costs for each group! One response was that language may be a concern, but this may be an interesting option.

**Some more ideas: HSP, one of the new Federations we are helping through RareTogether, with no budget but a little time and web-savvy by their President, Fernando, set up a nice home page at https://sites.google.com/site/eurohsp It’s free and fairly simple. The home page to browse is https://sites.google.com/site/sites/system/app/pages/meta/dashboard/create-new-site

The other is a negative one from me, here at RareTogether we are using WordPress and it is a pain in the neck if you don’t have a lot of time and learn it well and if you have limited expertise.

Finally, I should mention that Eurordis has a tool called RareDisease Communities or RareDisease Connect at http://www.rarediseasecommunities.org/en that not only allows you to set up a fairly complete website for your European Federation, it offers almost real-time translation into at least 4 languages as needed! Visit it and if you like it, there is a “contact” button that you can fill in and find out more about it!

Communications advice for new groups

admin — Mon, 31 Oct 2011 10:06:49 +0000

The toolkit provides ideas, advice and practical tips to help you in communicating with the wider community, and examples of how other Patient Groups have gone about recruiting new members, planning and delivering local initiatives, supporting other local Patient Groups and working with their Medical Centres and other professional organisations. The toolkit also contains a range of template resources to aid your communications activity, including a press release, and website and newsletter copy.

In addition to this toolkit, you can regularly receive further tips and advice and hear about the work of other Patient Groups by signing up to our Campaign Update email. You can register to receive the Update through the Growing Patient Participation website, www.growingppgs.com.

Mission statement

admin — Mon, 31 Oct 2011 09:31:27 +0000

A Mission statement describes the organization’s:

Values
Target Audience
Core Services
Unique Attributes

A mission statement is a succinct statement that conveys your organization’s reason for being. Coming up with an effective mission statement is worth the time and effort. In many ways, it is a fluid version of your objectives in your statutes or by-laws. How can you directly transmit your purpose to the press, for example, or even to a fundraiser, in few words?

A very thorough guide on how to write a mission statement can be found at http://nonprofit.about.com/od/nonprofitbasics/a/mission.htm

Three examples from the Steering Committee of RareTogether:

http://www.ecfs.eu/

http://www.debra.org.uk/about-debra.html

http://www.oife.org/home/index1-uk.html

Paying to fundraise?

admin — Mon, 31 Oct 2011 08:46:59 +0000

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 good proposal), and work on organisational strategy. One example is www.grantstation.com where you can watch videos that should give you an idea of what you would get if you became a member of their organisation.

Mission-driven fundraising

admin — Mon, 31 Oct 2011 08:31:09 +0000

A wealth of information, this site is based on the premise that you are dedicated to your mission and to fundraising. At http://nonprofit.about.com/od/fundraising/u/happydonors.htm there is even a section on Fundraising during a Recession!

European Foundation Centre

admin — Mon, 31 Oct 2011 08:14:22 +0000

The EFC is an international association of foundations and corporate funders dedicated to:

Creating an enabling legal and fiscal environment for foundations
Documenting the foundation landscape
Strengthening the infrastructure of the sector
Promoting collaboration, both among foundations and between foundations and other actors

They have hundreds of members from all over Europe:

http://www.efc.be/Membership/Pages/Currentmembership.aspx

A complete list of their activities can be found at http://www.efc.be/Pages/EFCWelcomePage.aspx

As of July 2011, they share space with six other major European foundations in Brussels. Please see pdf below.

They are also working on European guidelines for NGOs. See pdf below.

Funds for NGOs

admin — Tue, 25 Oct 2011 15:29:15 +0000

fundsforngos.org is an online initiative, working for the sustainability of NGOs by increasing their access to donors, resources, and skills. It uses technology to spread knowledge and increase capacity. NGOs around the world all face unique challenges in attracting and maintaining resources for their programs. Though development funding is a multi-billion dollar pie many barriers prevent NGOs from successfully vying for these funds. First, announcements of funding competitions are fragmented all over the web and difficult to identify. Second, competition is strong and the application process arduous. How can NGOs spend less time fundraising and more time running programs? This was the founding concept for fundsforngos.org – to help reduce these barriers for NGOs and practitioners at all levels, and of all sizes and sophistication. Providing users with free alerts on funding availability was an important first step. Starting out only a few years back with a trickle of users, the website is now generating millions of page views. Source Link: http://www.fundsforngos.org/about-us/#ixzz1Z8u2CoO4 Copyright©FUNDSFORNGOS.ORG.

Fundraising toolkit

admin — Tue, 25 Oct 2011 15:26:48 +0000

As a patient group, you will be well aware of the uncertain and insecure funding environment that you have to operate within – and in the current economic climate, this uncertainty is only set to increase. Despite this, there are many ways of raising money and lots of funding sources. The opportunities can be overwhelming for any organisation, whether you are just starting out or more experienced. The aim of this fundraising toolkit, therefore, is to make the fundraising process as straightforward as possible for your organisation. Divided into sections, the toolkit offers practical information and guidance on how to successfully fundraise for projects while keeping the running costs of your organisation in check. We have a glossary of all fundraising terms you need to know. All the information can be adapted to suit the particular needs of your individual organisations, and we hope this resource will help you to raise much-needed money for your organisation, and at the same time, enable you to have fun. Good luck! http://www.epda.eu.com/epda-publications/toolkits/fundraising-toolkit/

Talk to your Parliamentarian – Come to Brussels!

admin — Sun, 16 Oct 2011 11:38:41 +0000

All European Parliamentarians are listed by clicking on the country you are from on http://www.europarl.europa.eu/members/public/geoSearch.do?language=EN

There you will find their emails to make first contact. Sample message (to edit as necessary!): Patients meeting EU Parliament – first step