International Lupus Federation Workshop, lead by Robyn Rickenbach (USA)
Duane Peters (LFA) introduces the workshop highlighting the importance of a focused common vision and message track to raise one voice around the world. As preparation to this meeting, a group of 9 countries (USA, Denmark, Italy, Canada, Australia, UK, Finland, Indonesia and Argentina) started the thinking to define what a lupus federation could look like, and what its top priorities would be. Today’s session will seek to get a broader input from this audience before concluding and driving possible next steps.
Robyn Rickenbach opened the workshop by asking each country to say its name and give one word about the world federation project: Hopeful, great, opportunity … are often coming up
She then asks participants in the pre-meeting to express their key take-aways from the London meeting. Three key take-aways emerged: (a) The day was quite positive, ending with a feeling that “we can do it”. (b) We need to find how to do it, but we need it, and (c) A federation will not replace local country groups, but help them grow.
The panel then answers questions from the audience: There is a conviction amongst panellists that such a federation will not bypass smaller countries, but rather enable them to grow their capabilities. Regional groups have a role to play as the commonality of issues is bigger at regional level: Europe will keep its role, Asia pacific should grow, Gladel is taking initiatives to unite patients in Latin America. No group will lose its local colour because each group is as important as any other one, the smallest as important as the largest. We do not want to leave anyone behind.
LFA explains that a federation can help share material, develop a common program, training, sharing of what works well, … Lupus UK is also very ready to supply information, books, leaflets, booklets, video’s, DVD, … to those needing it. Events like WLD have been gradually embraced by many and are now used for fundraising, awareness, conferences, … This is a good example of uniting idea, where necessary flexibility has been identified (many celebrate WLD on a day other than May 10). Each country has their own colour, and can best organize their campaigns in their own way. The goal is to have an inclusive process. The federation could offer a website for communication, help enrol celebrities, have existing ones better reach out to the world.
The panel highlights how each group can help the start-up effort. A simple, but necessary action is to respond to emails, take part in the federation, share thoughts and findings, participate. We need communication because if we don’t know what each other is doing or needing, we can’t include it. Inclusion emerged as the key theme that is raised in the discussion.
The audience is then divided in 3 subgroups, and rotates through flipcharts to answer 3 key questions. The detailed feedback received will be later distributed and is not included in this report, but here are the few words highlights for each topic:
On “What key long term positive do you expect from ILF?”: Awareness, sharing of information, better quality of life
On “What would make success?”: Democracy (big worry – how will my voice be heard), Unity and Common goal (working in the same direction), Funding (won’t work without money)
On “What one service would do the most to advance the cause?”: Awareness campaign (including celebrity involvement, …), Safe treatment for all (access to drugs), Capacity or skills training.
Duane thanked the audience for input. This federation should unite all of us and help to reach common goals. From this material, the steering team will enrich what has been designed so far. A group of five countries/area will close on a final document that will be sent to each of the organizations, also mapping the next steps in the organisation process and defining a strategic plan so that by the next congress we will have plan and actions!