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EUROPEAN PATIENTS' FORUM---EPF
NEWSLETTER

Welcome

With COVID-19 being at the centre of the world medical stage, EAU Patient Information is focusing on the global need for accurate and trustworthy information by creating a Frequently Asked Questions (FAQs) page specific to COVID-19 and patients who have urological cancer. The FAQs page is available on the EAU Patient Information website.

Healthcare professionals
You may be a healthcare provider working with patients who have cancer and similarly have many questions at the present time. For example you may be wondering, what advice can I give to my patients, or to my medical team, regarding COVID-19?  This question and many more that you may have are very important and we really want to hear from you about the things that concern you right now. A multidisciplinary team of medical experts is in place to find the best answers to your questions and to share them on our FAQs page.

Our FAQs page will be continually updated as our medical experts find answers when more is known about COVID-19 and how it is affecting people with cancer worldwide. We are proud to be working with our sponsor Astellas Pharma* to help you access information which best serves your care needs. At EAU we are here to help you and we very much appreciate your assistance in helping us.

Digital School logo

Take part in the EURORDIS Digital School 2020!

The next Digital School webinar will take place on 29 July on the topic of how to build engaged online communities. You can also create an account for the EURORDIS Open Academy online platform to take part in the series of e-learnings and webinars that make up the 2020 Digital School, all 100% online and free!

alejandro.cuenca@eurordis.org

ANNOUNCEMENT
WORKSHP/ROUNDTABLE
CENTRAL EASTERN EUROPE
11th SEPTEMBER 2020

In view of the ongoing Covid-19 situation and the uncertainties which this has created, the WFIPP Executive Council confirms the postponement of the CEE (Central Eastern Europe) workshop/roundtable scheduled to take place on 11th  September in Budapest. This roundtable will take place,  but at a later date, probably in the first quarter of 2021 with the same or similar programme and participants.
However,  a  small-scale pre-meeting of the organizing committee and key partners will take place in Budapest as a face-to-face event,  if at all possible (otherwise virtual)  on  11th  September.

Please keep a close watch on the website for updates’

EMA Public Consultation: new guidance on lay summaries of clinical trial results

As you know, EPF has been working with a multi-stakeholder group since 2019 on a new guidance document to facilitate the production of lay summaries of clinical trials. Publication of lay summaries along with the comprehensive summary results is a requirement under the new EU Clinical Trials Regulation. EPF published our position paper on this topic in 2015.

We are pleased to share the final draft of the new Recommendations for Good Lay Summary Practices, which is now undergoing a public consultation until 14 September 2020.

Feel free to disseminate this document to your networks, and submit comments through the following web link.

Through the link you can access two documents:

1. The Recommendations document for your review (PDF)

2. A template to submit your comments (Word)

Please send any comments you may have using the template to GLSP@efgcp.eu

Next steps:

  • The multi-stakeholder group will review and integrate feedback from the public consultation during September-October

  • We expect to finalise the document soon afterwards and release it in December 2020.

Dear Friends,

We are excited to announce ICS 2020 is going online!

We have decided to transform ICS 2020 into a fully online meeting for you to experience at home, while protecting the safety and well-being of all meeting participants. We will provide an outstanding programme of educational exchanges, scientific news and best practice updates. We will incorporate the aspects of ICS you enjoy the most.

For more information about the new ICS 2020 format, please click here.

Along with our work and everyday lives, the COVID-19 pandemic has also challenged our model of face-to-face meetings as authorities have continued to impose travel restrictions and physical distancing. We still believe in the importance of continence research and education. What we ask of you now is for your continued support and the time to make the required changes to our programme. As you know, the ICS is a registered Charity in the UK and the annual meeting is our main form of income, which enables us to achieve our charitable objectives.

Please continue your commitment to the ICS family by joining us online from 19 – 22 November!

 

Dear Readers:

Understanding why bladder leaks happen and knowing the options that exist for you are two important keys in winning the battle against incontinence. In a recent NAFC survey, over a third of patients reported not knowing about various treatment options that exist for incontinence, and only 17% of patients were satisfied with the treatment that they were on.

Knowledge is power. That’s why we believe that understanding the ins and outs of your condition is so important. The more you know about what’s causing your condition and the ways you can treat it, the better equipped you will be to manage it.

NAFC has lots of tools for you to be able to do this – our conditions section is a great educational resource to learn more about the type of bladder leaks you may have. And our diaries can help you dig deeper to learn more about how specific activities, foods and drinks affect you specifically.

Watch our newest video in the Voices of Incontinence series about Understanding Your Condition, and be inspired to become your own advocate for your health. Then head over to www.nafc.org to learn more.

STATEMENT FROM THE WFIPP EXECUTIVE COUNCIL

There has been a recent change in the name of WFIPP.

The new acronym WFIPP stands for World Federation for Incontinence and Pelvic Problems.

This to reflect the updated Statutes and also compliance with the new regulations in Italy where WFIPP is currently registered.

But nothing has changed in our determination and drive to raise awareness about continence issues and of course look after the interests of patients and their famillies throughout the world.

So please take part next week in the World Continence Week Virtual Sneak Peek Week.

We have really tried to put together a great array of topics and links to informative sources, tools, blogs,podcasts and much more from across the globe. Something for everyone in these Covid-19 times.

See the link for the landing page which will go “live”  just before 15th  June.

You will be able to access all the content at:

http://sneakpeakweekwcw20.org/

Please do spread the word and make sure this very special campaign week is a success.

Thank you

The WFIPP Executive Council.

EU4Health statement for more and better coordinated European health policy!

Shaping the future of health in the EU together has therefore never been more urgent. To this end, members of the EU4Health coalition, which EPF is co-leading together with EPHA, have pooled their strengths together in a joint EU4Health statement, calling to act now for a stronger and more ambitious European health policy.

Sign EU4Health statement for more and better coordinated European health policy!

DATA SAVES LIVES – FIRST TWEET CHAT ON HOW TO COMMUNICATE ABOUT HEALTH DATA

Anyone can participate--just log on to Twitter at 13:00 on 4 June

 

 

On 4 June at 13:00 CET the Data Saves Lives initiative will host its first tweet chat on how patient groups can best communicate on the topic of health data, especially during these unprecedented times.

The live tweet chat features an expert panel comprising the Dutch Patient Federation (Patientenfederatie Nederland), the International Niemann-Pick Disease Registry, Ange Bradshaw from Alzheimer Europe, and patient expert and multiple sclerosis blogger, Birgit Bauer.

The live tweet chat features an expert panel comprising the Dutch Patient Federation (Patientenfederatie Nederland), the International Niemann-Pick Disease Registry, Ange Bradshaw from Alzheimer Europe, and patient expert and multiple sclerosis blogger, Birgit Bauer.
To learn more about Data Saves Lives, head to the dedicated webpage via this link.

Web-based digital platform

An ambitious project is about to be launched by WFIP(P) , supported by the technical expertise and resources of the web company, INNUO, based in Barcelona.
The project has already begun, with the distribution of the online questionnaire released a few days ago and which will end by 20th March, 2020. The data collected from this questionnaire will be used to set up a web-based platform, catering to the need for up-to-date information on all aspects of incontinence, including clinical practices, patient-centred activities, best practices etc.
It is a two-year project funded in the first instance by Medtronic with the co-operation of the global web company INNUO as outlined above. The first year will be used to set up the website (7 languages) and the second year will be for dissemination of the web-based ‘tool’.
At WFIP(P) we are extremely enthusiastic and optimistic about the project. Please see below the introductory power point about the project.

Your urgent participation is required. Please disseminate the questionnaire to all your members, patients and interested parties.

The time line is short and we urgently need your responses.
Please see alongside all the links for the seven languages.
Please note the questionnaire is entirely anonymous and all responses will be anonymized

Thank you for your cooperation.
This project is very much in the interest of all patients,carers, hcp, et patients, caregivers, healthcare professionals, physical therapists,continence nurses, researchers, etc.

LATEST EVENTS

EAU 20 AMSTERDAM

Important announcement

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WFIP UK Workshop, London, 25th February

WFIP UK Workshop, London, 25th February ‘The economic burden of incontinence’ WFIP is pleased to…

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LATEST NEWS

MAY 15th, Online conference MALE URINARY INCONTINENCE

15 May 2020 11-13:20 Tehran Local Time ON NEW GENERATION OF ARTIFICIAL URINARY SPHINCTER ZSI…

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EUROPEAN PATIENTS FORUM STATEMENT

The COVID-19 outbreak and the associated public health crisis presents an unprecedented challenge to national…

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WEBSITE PLATFORM PROJECT ON ITS WAY!

Steering Committee online workshop for the WFIPP web platform project 30th April, 2020Thursday, 30th April,…

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IMPORTANT UPDATE!

Due to the difficulties still arising from the unstable situation caused by COVID19, the WFIPP…

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PARADIGM — FROM GAPS TO BRIDGES

THE FUTURE OF PATIENT ENGAGEMENT IN CENTRAL AND EASTERN EUROPE   The hashtag#workshops on hashtag#patientengagement…

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EYEFORPHARMA — ON DEMAND SESSIONS AVAILABLE UNTIL MAY, 2020.

  EYEFORPHARMA offered an amazing opportunity to participate in its virtual event some days ago.…

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World Continence Week 2020 15-21 June 2020

Further details and the 2020 toolkit in the process of preparation. Soon to be released…

MISSION

For people living with incontinence and pelvic floor dysfunction, WFIPP’s mission is to:

JOIN US

WFIPP is mostly comprised of patient advocacy organizations, though doctors, non-government organizations, and non-commercial entities are welcome to become members of the WFIP. If you want to join us, please contact us here.

Be the patient voice
Be heard in society and by policy-makers
Be a global umbrella for national organizations
Encourage an open public debate and break stigma and taboos
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