We are posting today on our web site the specific pages deducted to our joint event with Grandeco. Indeed, as announced in our Paris Convention, LUPUS EUROPE has signed a first charitable gift agreement with a non-pharmaceutical partner, Grandeco.
Under the terms of our agreement, Grandeco, a producer of decorative wallpapers, will donate to LUPUS EUROPE an amount of 7c per roll of wallpaper sold in their new Children collection, with a minimum guaranteed of 10,000 euros in 2014. On top, Grandeco will provide an easy access to a LUPUS EUROPE specific webpage through a QR code, and have a few top level awareness words on lupus in their catalog. This is a first step into a new type of awareness building, reaching a broad public, as well as a new fund-raising opportunity.
We have committed that the funds will be used to advance the cause and situation of children suffering directly or indirectly from lupus in Europe. This includes both children directly affected by lupus, being themselves lupus patients, or suffering indirectly as family members have lupus. While the incidence of lupus amongst young children is very low, many more children face the situation of a family member, usually their mother, having to deal with lupus flares. The complexity of the disease, the fact it mainly affects young women at the age where they form a family, the often unpredictable symptoms arising with little or no warning, directly affect those children’s lives all over Europe.
The wallpaper collection will be launched in January 2014, so it was key that our pages would be ready for that time. Many thanks to Gábor Varga, co-opted Trustee for Web, that has implemented all that on short notice during the holidays! You can find those pages by following this link ( http://www.lupus-europe.org/activities/projects/gdc/ ) You will find there (i) facts on the donation (as required by UK Charities commission), (ii) an easy to read information on lupus, (III) a specific page on children & lupus, and (iV) the story of “Emily”, who was the inspiration behind this project. The pages also provide a link to your national pages, so that people can get information in their own language, or get in contact with your organizations.
As we work further on this event, we will be interested in existing material that we could use and is relevant for the theme “children living (directly or indirectly) with lupus”. We really would love to build on the materials you already have, and the projects you already deploy to create synergies rather than re-invent the wheel. We have ideas... but you might have better ones. So don’t hesitate to get those to us.
LUPUS EUROPE Secretariat
On behalf of Alain Cornet
Treasurer - Lupus Europe