Dear Members,

You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so that you can make your own decision as to whether you would or not like to take part.

Yours

Alain Cornet
Secretariat – LUPUS EUROPE

REQUEST RECEIVED FROM PATIENT VIEW:

For the 5th year, PatientView is asking health campaigners across the world to help compile the annual CORPORATE REPUTATION INDEX OF PHARMA

• The Index is taken seriously by the pharma industry as part of its efforts to become more patient-friendly.
• The results of this 2015 survey will show you how your colleagues rate the world’s various pharmaceutical companies in 2015 (whether good or bad).

About the questionnaire
The survey is open to any health advocacy organisation worldwide. Please circulate this email to any other patient groups that you think might also be interested. The survey has only 10 very simple questions, and will probably take no more than 10-15 minutes of your time to complete. The survey is anonymous, unless you prefer to specify otherwise.

To be sure your response is made in time, please complete before Monday, 18th January 2016.

To enter the survey, please click on the following live link: http://www.surveymonkey.com/r/corp-reputation-pharma-2015

To thank you for your participation in this study …

… all respondents to any PatientView study get a final copy of the resulting report (if they wish).

A brief statement of clarification

This 2015 study intends to determine how patient groups around the world perceive the pharmaceutical industry, with the aim of improving standards throughout the industry to levels that are satisfactory to patients.

The study is paid for solely by PatientView, a UK-based research and publishing group that specialises in studying trends in the patient-advocacy movement, and which passes valuable and unique information back to patient groups. All NGOs participating in the study can receive a free copy of the report on the survey results (if they wish to). PatientView funds the whole exercise by selling the report to any pharma companies that wish to read it.

Further information about PatientView reports can be found at our website: http://www.patient-view.com/bull-corp-reputation.html

After completing the survey you will be taken to PatientView’s website where you can see press releases for the corporate reputation studies conducted for 2014

Contact details for this study: Alexandra Wyke, CEO, PatientView. Email: alexwyke@patient-view.com

PatientView UK
Tel: 0044-(0)1547-520-965
E-mail: info@patient-view.com
www.patient-view.com
Registered in England Number: 3944382
Registered office:
One Fleet Place London EC4M 7WS

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💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s disease and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this #EuropeanSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
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📣 Upcoming ERN RECONNET Webinar on Lupus Nephritis!

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🗓 11 March 2026
⏰ 4:00 p.m. CET (i.e., Paris time).

🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Dr Matthias Schneider & Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe.

Lupus nephritis remains one of the most serious complications of systemic lupus erythematosus, and treatment strategies continue to evolve as new evidence emerges.

🔎 This webinar will explore:
•⁠ ⁠The scientific rationale for triple therapy.
•⁠ ⁠Current clinical evidence.
•⁠ ⁠What this may mean for outcomes in lupus nephritis.

Whether you are a healthcare professional, researcher, or patient, this session is not to be missed!

Register now! us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration
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1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
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3️⃣ Only a small minority of patients report long-term stability without flares.
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That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

✅ These updated recommendations reinforce several key messages that matter to patients:
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- Timely kidney biopsy when needed.
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🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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