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