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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Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #rarediseaseday!

#ShareYourColours
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#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw
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Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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