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SEP 2019

Dear Lupus Europe Friends and Members, 
Summer is over and Lupus Europe is approaching our most exciting time of the year: our annual Convention! This year we will be meeting many of our delegates from national lupus organisations in Liverpool, UK. We are really looking forward to seeing some familiar faces and hopefully a lot of new ones and having some interesting, educational and FUN days! The theme for this year´s Convention is: Education to empower and we hope to empower a lot of lupus patients throughout our network.
Jeanette Andersen, Chair Lupus Europe

what is coming!



EULAR Congress
Madrid, Spain, June 2019
20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. 
read all about it here

Forum 5-6 June 2019

On June 5 and 6, I went to Milan, Italy to join the RareDERM Forum, a forum in which all participants worked on building a cohesive community of rare dermatology disease organisations. The results of these discussions resulted in a RareDERM Forum 2019 Outcomes Report. With the help of speakers/presentations/workshops gathering information how and what is necessary to create the RareDERM alliance.
Global advocacy: Create a Global Awareness Day DERM ((rare) skin diseases. Workgroup with Leigh-Anne Nel (XP Society (ZA)), Nicola Miller (Teddington Trust (XP) (UK)), Marc Yale (IPPF,(USA)), Trina Harris (“fresh” Lupus Patient, just connected with Lupus UK (?)); Daisuke Ito (Albino, JP).
Other points for creating Alliance:
  • Build a RareDERM Alliance;
  • Conduct a RareDERM landscape analysis;
  • Leverage power of alliance;
  • Creater registries;
  • Establishing a resource hub, using standards for consistent data (this one came from the Pharma group, including Usman Khan (EPF).
I think it is a great(er) goal to create such a RareDERM forum (Global). For primary Skin Lupus this could be very interesting (maybe an overlap with ERN (European). Lichen Scleroses seems to appear more frequently when you have Lupus.

Global Skin Conference
7-9 June 2019

After this forum I attended the Conference for three days, the research on skin is complex, Gen Therapy is developed in research, JAK inhibition is a research done for Atopic Dermatitis, which is interesting also for the skin involvement with lupus. (see presentation (part of which was shown by Dr John Su here:.
GRIDD (Global Research on the Impact of Dermatological Diseases) is now in Phase 3, the planning is to end the Project in 2022. (see presentation by Professor Chris Bundy and Christine Janus here.
Annemarie Sluijmers, Secretary Lupus Europe


Positive top-line results from TULIP 2 trial demonstrate a statistically-significant and clinically-meaningful reduction in disease activity based on composite lupus assessment
On 29 August AstraZeneca announced that the Phase III TULIP 2 trial for anifrolumab, a potential new medicine for the treatment of systemic lupus erythematosus (SLE), met its primary endpoint, achieving a statistically-significant and clinically-meaningful reduction in disease activity versus placebo, with both arms receiving standard of care.
The TULIP 2 trial involved administering a 300mg dose of anifrolumab or placebo, whereas the TULIP 1 trial, which reported results a year ago, had groups of patients receiving 150mg, 300mg or placebo. The TULIP 1 trial did not meet its primary endpoints. TULIP 2 also employed a different assessment tool, which measured results across all organ systems.
Mene Pangalos, Executive Vice President, BioPharmaceuticals R&D for AstraZeneca, in the company announcement noted that: “Systemic lupus erythematosus is a debilitating autoimmune disease, but only one new treatment has been approved in the last 60 years. These are important results and we will now review the full data set and explore pathways to bring this potential new treatment to patients.”

for the full announcement from AstraZeneca click here

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