About Alain

Secretariat LUPUS EUROPE: Alain worked as a Global Finance executive with Procter & Gamble for over 32 years, in positions such as regional CFO for the Balkans, Head of Taxation for Europe, Middle East and Africa, and finally Head of Global Indirect Taxation. In parallel he joined the OECD WP9 Technical Advisory Group in 2008 and in that role, was one of the key contributors to the OECD International VAT guidelines, and a speaker in various International OECD conferences. This Business and International Organisation background gave him significant experience in the areas of Finance, Strategy, running international operations, working with Governments, lobbying, negotiation and presentation skills, … In 2015, he decided to gradually shift his career focus to supporting charities, a move that will be fully completed by the end of 2017. As husband to Bernadette, Chair of the French-speaking Belgian Lupus group, he has been involved with the Lupus patient community for over 10 years. He served as LUPUS EUROPE’s Treasurer from 2012 to 2014. In 2015, he became General Secretary of LUPUS EUROPE, and in that capacity, advises and supports the board in its responsibilities, and manages the day to day operations of LUPUS EUROPE, as well as various projects such as the Patient panels or the 2017 Research Workshop.

Alain is currently engaged in multiple projects including representing the Lupus Community in the European reference Network ReCONNET, being part of European Joint program on Rare Disease Work Paper 20 on Clinical trials, and Treasurer of EURORDIS.

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🇸🇪 Spotlight on Lupus Sweden!

💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.

💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.

📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.

🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.

🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.

👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!
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📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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📢 Calling all #lu

📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

Try it now: lupusgpt.org/
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🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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