EUROPEAN PSORIASIS WEEK #EPW

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EUROPSO presents European Psoriasis Week as an annual week dedicated to people with psoriasis and/or psoriatic arthritis. This is a new campaing where we want to make more visible psoriatic disease.

Aim of European Psoriasis Week

European Psoriasis Week is dedicated to people living with psoriasis or psoriatic arthritis. During the last week of May, we aim to address their needs:

Raise awareness

Psoriasis affects millions of people around Europe – not just physically, but also socially, emotionally and financially. European Psoriasis Week aims to raise the profile of this debilitating disease and increase awareness of the effect it has on people’s lives.

Spread information

For many, psoriasis is still a relatively unknown disease. On European Psoriasis Week, we spread information about psoriasis, dispel common myths and answer questions. We also inform patients about their own condition, so they can feel empowered to speak about it.

Improve access to treatment

On European Psoriasis Week, we lobby to give people with psoriasis better access to appropriate, affordable treatment. That’s why we specifically address key health decision-makers like national governments, policy-makers and healthcare providers that day.

Give the psoriasis community a voice:

Many people living with psoriasis may struggle to get the world to listen to their needs. European Psoriasis Week is an opportunity for the psoriasis community to speak out from a common platform – and have its voice heard.

PsoProtect and PsoProtectMe Update – January 202

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Dear PsoProtect supporter,


We are so grateful for your ongoing contributions to the global psoriasis/COVID-19 registries, PsoProtect and PsoProtectMe. We are delighted to share our latest update – attached and copied below, alongside a plain text version. 
PsoProtect – please continue to report any cases of suspected or confirmed COVID-19 in psoriasis
PsoProtectMe– please encourage your patients to complete the PsoProtectMe survey, whether or not they have had COVID-19

PsoProtect and PsoProtectMe Update – November 2020

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Dear PsoProtect supporter,

We are so grateful for your ongoing contributions to the global psoriasis/COVID-19 registries, PsoProtect and PsoProtectMe. We are delighted to share our latest update – attached and copied below, alongside a plain text version. 
PsoProtect – please continue to report any cases of suspected or confirmed COVID-19 in psoriasis
PsoProtectMe– please encourage your patients to complete the PsoProtectMe survey, whether or not they have had COVID-19

A Polka dot Day (Puntíkový den)

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Let’s put on polka dots clothes and get rid of people’s prejudices. No one with psoriasis or psoriatic arthritis should be left alone with their worries. That’s why we decided to hold a Polka dot Day on the occasion of World Psoriasis Day, which this year falls on Thursday, October 29, 2020. 

We will be very happy if you join us and together we will support psoriasis patients by wearing clothes or accessories with polka dots on this day. This will let our surroundings know that we have known with the basic facts about psoriasis and that we are not indifferent to these people. 

       Yours “Sister in action” Gabriela Doleželová  association Revenium and SPAE

PD_letaky_EN2_nahledPrenesi

EPIDERMIA – Greece receives an important award for the site PSORIASIMOU.GR

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The Greek member of Europso, Panhellenic Society of Patients with Psoriasis and Psoriatic Arthritis, Epidermia, was awarded at the Healthcare Business Awards 2020, Greece, for the website www.psoriasimou.gr  (translated my psoriasis) created in collaboration with Cactus Digital Growth. The committee awarded the Gold Award to Epidermia in the category “Patient Associations”, Actions aimed at informing / raising awareness / preventiνγ, thus recognizing the important role that psoriasimou.gr plays in informing and raising public awareness about psoriasis and psoriatic arthritis.

The site psoriasimou.gr is a dynamic informative website, in which all patients can access valid and scientifically documented information from experts on issues related to psoriasis and psoriatic arthritis. At psoriasimou.gr one may can find articles by specialized scientists on psoriasis and psoriatic arthritis, educational videos, quizzes and infographics, material from the World Health Organization (WHO), Europso and IFPA, as well as personal stories by patients, who write about their jun. The site addresses to psoriatic patients, their families and friends, as well as the public.

The team of Epidermia is honored for this distinction that recognizes it’s work and effort. Epidermia is committed to continue in this patient-centered direction with the aim of valid information and reduction of stigma.

In the following link, you can see the awards in detail: https://www.healthcareawards.gr/

PsoProtectMe survey

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We’re asking everyone around the world with psoriasis, whether or not you have symptoms of COVID-19, to complete the PsoProtectMe survey (www.psoprotectme.org).  

The online survey takes only 5-10 minutes and asks about your symptoms, psoriasis treatments and any underlying health conditions you may have. If you have suffered from COVID-19, we will ask how this has affected you and your psoriasis.  

Your information will help us understand how the pandemic is affecting people with psoriasis, and whether the treatments we use for psoriasis increase (or decrease) the risk of severe COVID-19 infection. This will help healthcare professionals make important decisions about the clinical care of people with psoriasis during the pandemic.  

Your contribution will benefit everyone – please help by completing the PsoProtectMe survey today. 

PsoProtect project

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Dear EUROPSO members,

In these difficult times, I would like to thank you for all the actions you as an organization do for your patients.

EUROPSO is a partner organization on the PsoProtect project. The PsoProtect is the Psoriasis Patient Registry for Outcomes, Therapy, and Epidemiology of COVID-19 Infection.

Below you can read the words from the PsoProtect steering committee, whose members are dr. Satveer Mahil, Prof. Chris Griffiths, Prof. Jonathan Barker and Prof. Catherine Smith.

PsoProtect is an international registry for health care providers to report outcomes of COVID-19 in individuals with psoriasis

We are incredibly grateful for your important contribution to this international effort. Please report your cases of COVID-19 in psoriasis using the PsoProtect case report form, which collects de-identified data and takes approximately 5 minutes to complete. You will be provided with a copy of your completed case report form upon submission.

The information you provide will rapidly inform clinicians when assessing risk and treating COVID-19 in patients with psoriasis and other immune-mediated inflammatory diseases. It will help improve our understanding of how factors such as immunomodulator therapies and comorbidities affect outcomes of COVID-19 in psoriasis.

We will provide regular, open access summaries of all reported cases in PsoProtect, for the benefit of the international psoriasis community.

Thank you,

Dr. Satveer Mahil, Prof. Chris Griffiths, Prof. Jonathan Barker and Prof. Catherine Smith

On behalf of the PsoProtect steering committee.

We please you if you can inform health care professionals about the PsoProtect project. The form must be completed by health care professionals caring for a patient with psoriasis and coronavirus disease 2019 (COVID-19).

Thank you for your help.

Stay healthy, stay home and be here for your patients 🙂

All the best,
Jan Koren
President

COVID-19: Beware of falsified medicines from unregistered websites

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Dear Europso member,

EMA is urging the general public not to buy medicines from unauthorized websites and other vendors aiming to exploit fears and concerns during the ongoing pandemic of coronavirus disease (COVID-19).

Vendors may claim that their products can treat or prevent COVID-19 or may appear to provide easy access to legitimate medicines that are otherwise not readily available. Such products are likely to be falsified medicines.

Falsified medicines are fake medicines that vendors pass off as real or authorized. They may contain the wrong or no active ingredient or the right ingredient in the wrong amount. They may also contain very harmful substances that should not be in medicines. Taking such products can lead to severe health problems or a worsening of your condition.

To protect yourself from fraudulent vendors, only buy medicines from a local pharmacy or retailer or from an online pharmacy that is registered with the national competent authorities. You can find the lists of registered online pharmacies in EU countries via EMA’s website or directly from websites of the national competent authorities.

All registered online pharmacies have a common logo which you can use to confirm that the site is registered. The logo consists of a rectangle with horizontal stripes and a white cross placed in the left half of the rectangle adjacent to the midline. Below this is the flag of the EU country where the online pharmacy is registered.

Before buying a medicine from a site, check that the site has the logo and then click on it. You will then be taken to the website of your national authority and shown a list of all legally operating online pharmacies. Check that the online pharmacy you have visited is listed there before continuing with your purchase. If it is not listed, do not buy any medicine from that site.

Keeping safe when buying medicines

  • Falsified medicines can cause serious harm
  • When buying over the internet, only use registered online pharmacies
  • Check that the online pharmacy you are using has the common logo
  • Click on the logo and confirm that the online pharmacy is listed on the national authority website
  • Do not buy medicines advertised as cures or preventive treatments for COVID-19. To treat COVID-related symptoms such as fever, discuss with your doctor or follow advice from authorities

The public is reminded that there are currently no treatments authorized for COVID-19. Medicines are available for treating symptoms such as fever in line with advice from your doctor or pharmacist.

In the event of a shortage of any medicines, you should follow the advice of your doctor, pharmacist or national competent authority. You can find some information about ongoing shortages on the websites of EMA and the national competent authorities.

This information has been published on EMA’s website with related content. Please check EMA’s dedicated webpage on COVID-19 for the latest updates.

CORONAVIRUS COVID-19 CONCERNS?

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Dear Friends,

We understand that you may have concerns about the current coronavirus known as COVID-19. EUROPSO and its medical board are actively monitoring information on this virus. We want to remind the psoriatic disease community that the National Centers for Disease Control are the best resource for updates and information regarding this novel coronavirus for our community. While we will make every effort to keep our information up to date as the situation with COVID-19 progresses, we would always recommend following the guidance on the your local health authorities’ websites first and foremost, as this will be the most up to date, and therefore the most accurate.

If you are experiencing respiratory symptoms, or if you have specific concerns about your situation or treatment plan, you should contact your dermatologist, rheumatologist or health care provider by telephone.

Psoriasis patients receiving biological treatment or immunosuppressive drugs have not been described as a risk group for developing more severe forms of coronavirus disease, so we insist that you do not be misled by alarmist information and consult your doctor if you have any concerns. Likewise, we remind you that, in the event of an episode of high fever or respiratory symptoms, you should go to the doctor or call the emergency telephone number, to receive instructions, but never self-medicate or make unilateral decisions about your medication.

While we will make every effort to keep our information up to date as the situation with COVID-19 progresses, we would always recommend following the guidance on the your local health authorities’ websites first and foremost, as this will be the most up to date, and therefore the most accurate.

For more information: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

Jan Koren
President of EUROPSO

Booklet on EMA pre-submission and assessment processes

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EMA has published a booklet describing the journey of medicine for human use authorized through EMA, from initial research to discussions on patient access to medicines across the EU. It can be found here. 

The booklet describes in particular how EMA supports medicine development by providing scientific advice and how it assesses a medicine’s benefits and risks once it receives an application for marketing authorization. 

All the steps involved in these processes, including the involvement of patients, healthcare professionals, and other external experts, as well as the principles guiding the scientific discussions, are outlined.