Patient View Survey

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.


Alain Cornet
Secretariat – LUPUS EUROPE


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:

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:

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:

PatientView UK
Tel: 0044-(0)1547-520-965
Registered in England Number: 3944382
Registered office:
One Fleet Place London EC4M 7WS

Patient stories…

Our first patient stories have arrived in our inbox. What a treat to read and something we look forward to sharing with you all in the near future.

We are still looking for further contributions so, if you’re wondering what to do with all that spare time over the holidays (and beyond), don’t worry, the deadline can be extended a little because we know you have something really important to share – your strength, courage and inspiration!

We will continue to take new patient stories on a regular basis, even after this first collection (and deadline) is passed.

Patient stories doc

EPF news

Input is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here.

The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.




Patient Panel dates set

The final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience.

All costs, travel, accommodation and meals are reimbursed. For further information, please click here.

LupuzorTM enters phase III

LupuzorTM enters phase III
Press release from the CNRS
Paris, 15 December 2015

LupuzorTM may become the first specific and non-immunosuppressant therapy for lupus, a disabling autoimmune disease that is currently incurable. Discovered by Sylviane Muller’s team in the CNRS Immunopathologie et Chimie Thérapeutique laboratory, in Strasbourg, this peptide is the subject of a CNRS patent (granted in 2009) and has already successfully completed phases I and II of its regulatory clinical trials, supervised by ImmuPharma-France. An international phase III pivotal trial1, also managed by this company, will begin in a few days’ time in the US when the first patient starts the treatment, before the trial is extended to Europe. Phase III is the last stage in the testing of a candidate drug, before it can be given market approval. The launch of phase III was the subject of a meeting involving around a hundred physicians on December 11-12, in Paris.

Call for Patient Panel participants!



A UNIQUE OPPORTUNITY to meet people living with lupus from around Europe

LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities of daily treatment, its negative aspects, the way people cope with it, the influence remission and side effects have on adherence, as well as collaboration with doctors to improve treatment, and what could be done to accept and manage pills for life (technology, coping tactics, tips and tricks, …).

The profile requirements are: to have an official Lupus diagnosis, to NOT have attended the previous patient panel and not yet be heavily involved in a national patient organisation. The participants should have a good working knowledge of English, and be diverse in geographic origin, age and gender. Male or female, young or less so, newly diagnosed or ‘veteran’, moderate or severe lupus, if you are interested, you can apply! The final panelist selection will  be made by selecting  8 or 9 people from the applications received, using diversity as a key selection criterion.

As a prerequisite for attending the panel, volunteers will need to have a 45 minute skype (non directional) interview with Davide Mazzoni, LUPUS EUROPE Co-opt advisor for Research. This interview is NOT a test or selection interview, but will enable the collection of initial responses on a series of questions from the selected panelists. Those interviews, as well as the panel itself, will be recorded and transcribed, but, just like the full panel experience, will be anonymous.
The workshop itself will take place in Brussels mid-March 2016, and last from Friday evening to Sunday afternoon. Travel costs will be reimbursed, with accomodation/meals organised and paid for by Lupus Europe.  Participants need to commit to attend the entirety of the workshop (no partial attendance).

Applications should be sent to the secretariat ( by December 22, 2015 latest. Candidates should send a short note in English applying for the panel expressing their interest  and add the following critical information : name, address, email, gender, age, type of lupus, current medication and ethnic origin. Answers should be expected before end December.

For any question, please contact