Page 38 - N&V Winter 2019

LUPUS EUROPE - LUPUS WORLD

“Let’s Join Together to Fight Lupus”

wOrlD luPus DAY: meeting point for those with a connection to European delegates are looking forward to
The World Lupus Day Observance had its LUPUS EUROPE. LUPUS UK was presentations from leading UK Lupologists.
annual presentation on behalf of the represented by Yvonne and Peter Norton, world lupus Federation:
World Lupus Federation by the LFA in with Trustee, Sammy Ainsworth and Sophie
Washington DC, 10th May. Ainsworth (RAiISE) also present. “vision for lupus” report:
Once again, this special day was marked luPus eurOPe: GSK combined with the World Lupus
Federation to produce the Report, launched
around the world with many national work Groups: 10th May. Many lupus patients worldwide
groups organising events. Examples had responded to the call to complete a
included; lupus Alert, mauritius went ‘live’ The five Work Groups, established 2018,
on radio and held an Information Day: The are working on a number of projects. In some short on-line survey. The Report can be
voice of lupus Foundation, Trinidad & instances, the Groups are being enlarged by found at: www.lupusuk.org.uk/a-vision-
for-lupus-report/
Tobago: President, Reeanna Erani Harrilal new members responding to calls for
was interviewed ‘live’ on TV and radio. The interested/qualified people with lupus. For information on the World Lupus
annual candlelight vigil at Port of Spain website: Federation visit: www.worldlupusfed-
attracted a large crowd with PoP (Put on eration.org
Purple) being very visible. The strap line The new website is now up and running and
“There’s US in LUPUS” was also used a vast improvement from the previous Important events on the horizon are:
extensively: sle DK: The Lupus Group of website, visit: www.lupus-europe.org ACR Annual Meeting - Atlanta, Georgia,
Denmark launched a new website and held blog:
USA - 8-13 November 2019
several information meetings: The lupus
Foundation of bangladesh: held a WLD The Blog has now migrated to the new LUPUS EUROPE Convention - Liverpool, UK
Convention with a panel of lupus specialists website and can be found at: www.lupus- - 22-25 November 2019
in a beautifully decorated hall: Gruppo europe.org/blog/ 12th European Lupus Meeting/SLEuro
les Young (lupus Italy): The Young Lupus The old LUPUS EUROPE Blog has been Conference - Bruges, Belgium - 25-28
Group organised an on-line collage of deactivated. If you were registered to March 2020
photos to promote #CrepiIlLupus: Lupus receive an e-mail for new posts on the old Yvonne Norton - UK Representative
Cyprus, Hungarian Lupus Group, blog, your address has also been migrated.
Portuguese Lupus Group: All held
information events with lupus specialists webinar: EULAR - European League against
speaking. The first webinar was used 5th March. This Rheumatism
Most member countries of LUPUS EUROPE, was a catch-up session to help reduce the ACR - American College of
Rheumatology
along with other World Lupus Groups, gap between Annual LUPUS EUROPE
organised Awareness/Information events on Conventions and keep members in touch LFA - Lupus Foundation of America
or around 10th May. Almost all were with events taking place. GSK - GlaxoSmithKline
prolific on Facebook/Twitter. The next webinar planned for 5th
The World Lupus Day website: September 2019 will be a "General
www.worldlupusday.org was updated information and interaction webinar".
with international news. All are welcome to participate; it is
necessary to have ZOOM installed on the
eulAr 2019: device being used.
This year Eular was held at Feria de
Madrid, 12-15 June, with in excess of Convention 2019:
14,000 delegates. As usual, LUPUS The Lupus Europe Convention will take
EUROPE had an information booth in the place in Liverpool, 22-25 November when
Eular Village which was also used as a the theme will be “Education to Empower”.

Join the LUPUS UK Online Forum The forum is home to a very friendly and

supportive community which actively welcomes
LUPUS UK continues to hosts an online new members and provides helpful responses
community forum with HealthUnlocked to people’s questions. Members enjoy being
www.healthunlocked.com/lupusuk. able to share their experiences and questions
HealthUnlocked is a social network for health. anonymously (something that is more difficult
It allows you to find others with similar health on Facebook), with people who understand
backgrounds to help you take on day-to-day what they are going through. Many members
health concerns together. The LUPUS UK have commented on how it is really reassuring
community has now been running for over to be able to talk to people going through
five years and is host to thousands of 268C the same experiences; it leaves them feeling
members who are affected by lupus. a lot less alone.
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luPus uK NEWS & VIEWS SUMMER 2019