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Initiative

Information and public awareness campaigns for diseases such as the rare genetic Fabry disease and Iron deficiency

Information and public awareness campaigns for diseases such as the rare genetic Fabry disease and Iron deficiency
SUBMITTED FROM:

GENESIS Pharma

The Greek pharmaceutical company that invests in global innovation for more than two decades

GENESIS Pharma was one of the first pharmaceutical companies in Europe to specialize in the promotion, sales and distribution of biopharmaceutical products and is currently the largest by turnover among Greek companies focusing on innovative medicines.

Through long-standing strategic partnerships with some of the leading global pharmaceutical companies committed to cutting-edge R&D, GENESIS Pharma has created a strong portfolio of innovative and high therapeutic value pharmaceutical products for more than 30 severe and rare diseases.

www.genesispharma.com


Contact

Objective Action

Information campaigns on health issues

​At GENESIS Pharma we believe that proper information and prevention is half the way to good health and quality of life, which is why we actively participate in public awareness campaigns.

a. On the occasion of Iron Deficiency Awareness Day, November 26, our company carried out - for the 4th consecutive year - actions to inform the public about the importance of iron in the body and the need to treat iron deficiency and iron deficiency anemia in a timely manner, as a continuation of corresponding international initiative of CSL Vifor #TakeIronSeriously.

With the central message of the Iron Deficiency communication campaign “Listen to your body”, on the occasion of Iron Deficiency Awareness Day on November 26, we continue the implementation of the public information initiative that we started in 2020. Through the page www.takeironseriously .com/en we want to raise more awareness about iron deficiency and iron deficiency anemia, in order to better understand why iron is so important, what can happen if we don't get enough, what are the symptoms and ultimately how to treat them effectively.

Through the page www.takeironseriously.com/en we want to raise more awareness about iron deficiency and iron deficiency anemia, in order to better understand why iron is so important, what can happen if we don't get enough, what are the symptoms and finally deal with them effectively.

b. The new information platform for people diagnosed with Fabry disease and the families of fabryfamilytree.gr, includes information about the disease, its symptoms, its diagnosis and the hereditary way of transmission between the generations of a family. At the same time, it includes a very easy-to-use application that helps the visitor create their family tree and automatically identifies family members who may carry a mutation associated with Fabry disease.

c.TOGETHER IN SMA: Information platform for Spinal Muscular Atrophy (SMA) in Greek

Our company demonstrates in practice once again its support and substantial commitment to the SMA community, forming, in close cooperation with Biogen, a reliable information tool for the holistic treatment of the disease aimed at both the medical community and patients in our country.

From December 2022, the electronic information platform "TOGETHER IN SMA" created by Biogen and then translated and adapted to the needs of the Greek reality by our team is now available in Greek.

The aim of our initiatives, beyond informing the public about diseases, is to highlight the importance of early diagnosis and prevention.

 

Target Audience

The information and awareness campaigns we develop concern patients but also the wider public, caregivers, members of patients' families, the medical community, anyone who wants to be informed.

Iron sufficiency concerns us all, because without sufficient iron the human body cannot function properly. Iron deficiency can affect almost all aspects of our lives, mental and physical health, metabolism, productivity, energy, and even sexual function. It concerns even more groups with increased chances of iron deficiency such as women, young children and teenagers, patients with chronic diseases, such as heart and kidney failure and inflammatory bowel diseases.

At https://hcp.togetherinsma.gr/ health professionals can find important information about the disease, such as symptoms, diagnosis, etc., as well as daily practice tools that can help them in their work, such as indicatively: scales evaluation, bibliography, etc.

At https://care.togetherinsma.gr/ patients and their caregivers can be informed about the disease and its course, find useful sources of information, but also practical tools that can help to better manage everyday life with this disease such an aggravating disease.

 

Duration

The campaigns are developed on the occasion of World Days (eg Iron Deficiency Awareness Day on November 26, Rare Disease Day on February 28) and Prevention Months but last, as far as media circulation is concerned, 1 to 1.5 months while videos and websites remain accessible all year round.


Description

a. For the Fabry disease campaign, patient leaflets and special leaflets for healthcare personnel (HCPs), advertising listings and banners for the media, press releases, a special website, and a special family tree application ( Fabry family tree application).

The fabryfamilytree.gr platform includes information about the disease, its symptoms, its diagnosis and the hereditary way of transmission between the generations of a family. At the same time, it includes a very easy-to-use application that helps the visitor create their family tree and automatically identifies family members who may carry a mutation associated with Fabry disease. The data of the application is completely confidential, with access only by each interested party.

b. The Iron Deficiency information campaign includes advertising listings and banners for the media, Press Releases, a special website and a special informative video which is also on our corporate website. In order to enhance the information of the public, a complete informative journalistic material was created which was a source for extensive articles in the Greek press. The action was supported by statements of leading scientists, Professors Thanos Dimopoulos, Ioannis Boletis, Gerasimos Philippatos and Alexandros Rodolakis.

The new informative website www.takeironseriously.com/el collects, with validity and completeness, all the information we need to know about the importance of iron, has an easy-to-use Index of Symptoms, and can help those who may have iron deficiency or anemia and do not know, to treat them with appropriate medical care.

c.TOGETHER IN SMA: Information platform for Spinal Muscular Atrophy (SMA) in Greek

Our company demonstrates in practice once again its support and substantial commitment to the SMA community, forming, in close cooperation with Biogen, a reliable information tool for the holistic treatment of the disease aimed at both the medical community and patients in our country.

From December 2022, the electronic information platform "TOGETHER IN SMA" created by Biogen and then translated and adapted to the needs of the Greek reality by our team is now available in Greek.


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Impact on Society

The results are measured through exposure (registrations, banner and video exposure) in the media (prints and websites where the relevant material was shown) and social media and through benchmark reports.

Also, the number of video views is recorded.

Also, an account is drawn up with the publicity of the Press Releases.

eg the Iron Deficiency Day DT was shown in 57 online media and 4 print media.



Initiative Location

The information campaigns are carried out in Greece and concern the Greek public. They take place online and in the media, print and electronic and social media, following the trends of the times.


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Working with Organization

The Fabryfamilytree.gr platform was created by the international pharmaceutical company Amicus Therapeutics, while for our country it is supported by our company, GENESIS Pharma, which is a strategic partner of Amicus.


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Workers Participation

All employees of GENESIS Pharma are informed about the campaigns carried out by the company so that they can participate in the way that each one can and wishes in the effort to inform the company. They participate in the dissemination of the respective campaign either by using the campaign materials (background images) in MS Teams during their online meetings, and/or by posting on their accounts with the campaign materials (which are notified by the Communications-CSR-Patient Advocacy department ) on social media, such as on LinkedIn or by promoting the relevant post from our company's LinkedIn page.


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Photos

Benefits for Οrganization

Our company was created to offer quality of life to thousands of patients living with life-threatening illnesses. It is a purpose that shapes our strategy and the way we operate every day, pursuing quality and responsibility in everything we do.

Actions that are part of our company's areas of activity and aim to improve patients' knowledge about the management of their disease and information about therapeutic developments, as well as the wider awareness of diseases, are a priority of the CSR program and at the same time strengthen the image corporate responsibility and the company's reputation (results from benchmark reports).




Connection with Global Goals







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