Help us understand the multiple facets of life with lupus today…
Hydroxychloroquine: Patient reported availability
Alain Cornet- Posted on
- CategoriesProject
Since Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Help us track Hydroxychloroquine access issues…
- Alain Cornet
- Posted on
- CategoriesProject
Over the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
CONFINED AT HOME ? Make the next few minutes useful by answering this short research on Patient Education!
- Alain Cornet
- Posted on
- CategoriesUncategorized
LUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
Today is Rare Disease Day
- Alain Cornet
- Posted on
- CategoriesAnnouncing, Events
Did you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
LUPUS EUROPE recognised as EMA partner
- Alain Cornet
- Posted on
- CategoriesAnnouncing
- 4 Comments on LUPUS EUROPE recognised as EMA partner
We are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
The Board invites you to a Webinar on February 17
- Alain Cornet
- Posted on
- CategoriesEvents
- 1 Comment on The Board invites you to a Webinar on February 17
We would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
HELP US COLLECT VALUABLE DATA FROM PEOPLE LIVING WITH LUPUS
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
Previous Chairs reflect on LUPUS EUROPE’s 30 Years Anniversary
- Alain Cornet
- Posted on
- CategoriesEvents
30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
EULAR PARE 2019, the Highlights
- Alain Cornet
- Posted on
- CategoriesUncategorized
The 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]