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XIV National Conference on Rare Diseases and Orphan Drugs

by informer

For the 14th year in a row, the National Conference on Rare Diseases and Orphan Drugs, organized by the Institute for Rare Diseases, is about to be held. The event is an annual forum that brings together all stakeholders – medical professionals, patients, medical students, industry representatives and health authorities – to present and discuss the latest developments in the diagnosis, treatment and follow-up of rare diseases, the development of European reference networks and access to innovation.

Place: Hotel “Imperial” – Plovdiv

Early bird registration deadline: August 1, 2023

Late registration deadline: September 15, 2023

Deadline for submission of abstracts: September 1, 2023

To contact the organizing committee: congress@raredis.org

Additional information can be found at XIV NATIONAL CONFERENCE ON RARE DISEASES AND ORPHAN DRUGS – Virtual Congress Center (raredis.org)

 

Veselina Kmetska – winner of the audience in the photo contest “Rare Nuances in The Colours of Life”

by informer

Veselina Kmetska, medical student, 3rd year, MF under Prof. Dr. Asen Zlatarov” Burgas

1. Hello, you have been chosen as the audience winner in our “Rare Nuances in The Colours of Life” contest, how did you find out about it and what motivated you to participate?

I learned about the competition “Rare Nuances in The Colours of Life” from the Facebook page of ASM-Plovdiv. As a member of ASMB-Burgas, I follow the association’s campaigns. I really liked the idea of ​​an exhibition dedicated to people with rare diseases and that motivated me to get involved.

2. Are you serious about photography? How did you decide which photo to feature?

I have been doing photography as an amateur for three years. In this way, I break away from the busy everyday life and enjoy the beautiful things in life. When I saw the theme of the contest, I immediately decided with which photo to participate.

3. What is the symbolism in your picture?

Symbolism of my photography – sometimes nature is very cruel to us humans, but nevertheless it gives us incredible views and colors to remind us that life is actually beautiful. People with rare diseases should know that after the strongest storms, a rainbow appears, after the hardest days – a beautiful sunset and after the darkest nights – a colorful sunrise. I believe that after every bad thing, something good happens, which gives us a sign that we should never lose hope and give up on the beauty of life.

4. What did you learn about rare diseases by participating in the competition?

From participating in the photo contest, I realized how important campaigns like this are. They inform the public about people with rare diseases, which will improve their care and treatment. Together we can improve the quality of life for these people and show them that there is hope for them and that they too deserve to be happy.

 

 

Hris-Maria Slavova – the big winner of the photo contest “Rare Nuances in The Colours of Life”

by informer

Hris-Maria Slavova, medical student, 2nd year, Medical University-Plovdiv

1.Hello, you are the big winner of our contest, how did you find out about it and what motivated you to participate?

Hello! As an active member of the Association of Medical Students – Plovdiv since my first year as a student, I have always been interested in the various initiatives of my colleagues. As soon as I found out about the Photo Contest from the then local head of the Public Health Committee (SCOPH) I was highly motivated to sign up and help. In my opinion, these diseases, although rare, should not be ignored and the opportunity to draw attention to them in such an attractive way made me embrace the idea and roll up my sleeves. The photo is a memory of a magical trip to Vienna with my colleagues and I have kept it close to my heart as something sentimental ever since. Subtly, I also invented a poem that would give my work even more meaning and show that people who embark on this adventure – medicine, do not find in it just dry facts and reference values, but immerse themselves in a world in which they can nurture their creative skills alongside developments in science.

2. Are you serious about photography? How did you decide which photo to feature?

I do photography as an amateur. I chose this photo because the butterfly for me symbolizes everything that is best in life. It begins as a pupa and through its own efforts becomes this lovely winged creature that gives us hope. Beauty heals, makes time stand still and gives us the freedom to think that there is always something in life to make you feel better and find meaning. It reminds that everything will be okay in the end.

3. What is the symbolism in your picture?

I am sure that the butterfly in my photo is a symbol of every single change that we undergo over the years and shows that with the accumulation of experience and knowledge our existence becomes more and more beautiful and meaningful. Rare diseases are the nuances in people’s lives that make it colorful and exciting. Therefore, let’s not forget that the butterfly is also a symbol of love that lives in us and accompanies us on our life’s journey, giving meaning to every single thing we do and encounter. Love is the support that the relatives give to these patients, but also the help of the medical specialists, and in this case also the students, who do their best every da

4. What did you learn about rare diseases by participating in the competition?

For a disease to be rare, it needs to occur in less than 1 in 2,000 individuals. In fact, until ten years ago, the situation in Bulgaria was not particularly encouraging for patients with such a diagnosis. With the establishment of the Institute of Rare Diseases and the National Alliance of People with Rare Diseases, as well as many other organizations, there is a positive trend in public awareness of the issue and in the possibilities of treatment and support for the sick. Celebrating Rare Disease Day is a wonderful initiative that is gradually becoming a tradition with more and more supporters.

 

Teodora Gencheva – ranked second in the photo contest “Rare Nuances in The Colours of Life”

by informer

Teodora Gencheva, medical student, 3rd year, Medical University-Plovdiv

1. Hello, you are ranked second in our competition “Rare Nuances in The Colours of Life”, how did you find out about it and what motivated you to participate?

As soon as I found out about the competition held by the Department of “Social Medicine and Public Health” of the MU – Plovdiv, I knew that I wanted to participate in it. I believe that every medical student, doctor, person working in the health sector has a role to play in the promotion of rare diseases and if everyone contributes in their own way to better public awareness of rare diseases, it would contribute to a better quality of life and better health care and social support for people living with similar diagnoses. This is what prompted me to take part in the contest, as well as my love for photography

2. Are you serious about photography? How did you decide which photo to feature?

Photography has been a hobby of mine for years, purely as an amateur, but I have participated in online photo contests before. It was extremely exciting for me to get involved in an initiative that is connected to two of my great passions – medicine and photography – and I am happy that the contest was organized with such a noble cause. The decision with which photo to participate was not easy, nor was it straightforward. After long photo sessions, many ideas, colors, double exposures, thoughts and discussion, together with Bozhidar Valkov we managed to create the photo, ranked by the jury in second place.

3. What is the symbolism in your picture?

The photo we chose represents not only the uniqueness and colors associated with rare diseases, but also the hands not only as part of the International Rare Disease Day logo, but also as a symbol of the support and love that every person needs and which each of us as a member of society should strive to give not only to our loved ones, but also to the people with rare diseases around us. This is exactly what I see the meaning of holding the International Day of Rare Diseases annually and in particular this year’s photo contest – achieving sufficient publicity regarding rare diseases and reaching the public with a call for support – not only medical and public, but also purely social and human, call for show of hands.

4. What did you learn about rare diseases by participating in the competition?

Participating in the competition made me realize how little I know about the topic of rare diseases, and it also became a reason for me to inform myself, read and familiarize myself not only with the essence of rare diseases, but also with the organizations in Bulgaria that deal with settling the rights of those diagnosed with similar conditions and the situation in our country and around the world, the fate of patients and what we as medical students could contribute to a brighter future for everyone living with a rare disease.

 

 

 

Ralitsa Dimitrova – ranked third in the photo contest “Rare Nuances in The Colours of Life”

by informer

Ralitsa Dimitrova, student of dental medicine, Medical University “Prof. Dr. Paraskev Stoyanov” – city of Varna

1. Hello, you are ranked third in the photo contest “Rare Nuances in The Colours of Life”, how did you learn about it and what motivated you to participate?

I am a fan of the pages of ASM – Plovdiv on both Facebook and Instagram, because I like the publications and information campaigns behind which are many hardworking and awake people. I found out about the contest from a Facebook event and knew immediately that I would participate. I am motivated by the fact that the competition is on an extremely important and serious topic from a medical point of view, and it becomes a field for creativity and imagination to create photographs that have an impact.

2. Are you serious about photography? How did you decide which photo to feature?

I have been doing photography for about 7 years. It has always been my hobby, a passion through which to express myself. Photography is something that I always carry in my heart, and the camera and lenses – always with me. I believe that the strongest shots are not posed, nor thought out in advance, I believe in chance and unpredictability in creativity. Each of my photographs carries an emotional value. For me, photography is an art through which you can speak loudly as long as the viewers can hear. I have tried to create in different directions of photography – art photography will always remain my favorite way to interpret different subjects. My choice of photo and concept was extremely easy – I knew I was going to create something to hide a message in, something that would be open to people and their imagination.

3. What is the symbolism in your picture?

for photo 1 /”Family is everything”/ – I know that there are extremely many families in which there is a person with a rare disease. Opportunities to exchange experiences with other individuals are often lacking. This can lead to isolation and loneliness for patients and families, and can lead to a lack of emotional support, even if medically provided. Through my photo, I want to tell families with a child with a rare disease that they are not alone and to hug each one of them. Few people think about the psychological impact of any disease on the patient and his family. for photo 2 / “Sunny perspectives”/ – I have always found a magic in sunsets that brings me something that nothing else in this world brings. Every day in different bright colors, every day different, but always beautiful. My message is one – to not stop loving and respecting people with rare diseases as we love sunsets – different, colorful, but always perfect as they are. Let’s assume that many people in this world are struggling to be part of society – different as the colors of the sunset, but having equal rights to help and support.

4. What did you learn about rare diseases by participating in the competition?

For me, this is an extremely important topic. I am glad that the competition is aimed at us medical students, because there are probably no people who understand the importance of awareness about rare diseases more than the medical professionals in the field and the students who read about it. Few people know that on average it takes nearly 5 years to diagnose a rare disease. Diagnosis is a real challenge. A specialist may never have encountered such a clinical case and may not be familiar with the rare disease from which the patient is affected. Many rare diseases include common signs, common symptoms that lead to difficulties and incorrect diagnoses. Symptoms can have an irreversible impact. Although they are the subject of a number of scientific studies, there is no cure for many of the rare diseases. These include hemophilia, muscular dystrophy, Bloom’s syndrome, Klinefelter’s syndrome, narcolepsy and many others. The EU considers a disease rare when it affects less than 1 in 2,000 citizens. To date, they affect 350 million worldwide, 75% of whom are children. Over 7,000 diseases have been identified. 2/3 of them are genetic, and the others are the result of infections (bacterial or viral) or autoimmune diseases. A huge percentage of genetic diseases begin in childhood, but it is not excluded that they manifest themselves in adulthood.

I wish success to the future doctors from ASM-Plovdiv, thank you for the wonderful initiative. We are the future and together we can do more. Let’s fight for the awareness of the population about many medical issues!

 

 

We celebrate World Rare Disease Day on 28th of February

by informer

Today we celebrate the International Day of Rare Diseases. On this occasion, the Institute for Rare Diseases and the Association of Medical Students – Plovdiv (ASM- Plovdiv) with the support of the National Alliance of People with Rare Diseases (NAHRB) and the Municipality of Plovdiv are organizing a photo contest for all students from Medical Universities in the country with a passion for photography. Residents of Plovdiv will have the opportunity to visit the photo exhibition in the period from 20.02.2023 to 12.03.2023 at the Roman Stadium square.

Medical science has identified between 5,000 and 8,000  rare diseases that affect between 6% and 8% of the population. Although a rare disease usually affects a small number of people, the total number of people with rare diseases in the EU is between 27 million and 36 million. In Bulgaria, people with rare diseases are 5% of the population, which means that in our country every 1 in 20 people has a rare disease. One of the mechanisms for improving the care of these people and their families is to increase the awareness and visibility of these diseases within the health system itself and among our society.

Today at 12.00 in the “2019” Exhibition Hall – City Art Gallery, the winners of the photo contest were officially awarded. The event was attended by students from all Medical Faculties in the country, Bulgarian and foreign language studies. 69 author’s photos were submitted by doctors, dentists and rehabilitators. 4 author’s photographs were awarded.

Welcome words on behalf of the Municipality of Plovdiv were delivered by Georgi Tityukov, Deputy Mayor “Sports, Youth Activities and Social Policy”. Yordanka Petkova, a representative of the National Alliance for People with Rare Diseases, emphasized the need for such events, as well as that the current students will be future doctors who will provide medical care for rare disease patients.

Prof. Rumen Stefanov presented the latest developments in the field of rare diseases. Presentation of some of the participants in the photo contest and the awarded students was made by Kristina Petrova – president of ASM-Plovdiv.

Third prize went to Ralitsa Dimitrova, 1st year dental medicine student at MU – Varna, with her photography “Solar Perspectives”.

Teodora Gencheva’s photograph called “Support in Our Hands” was awarded the second place. Teodora Gencheva is a third-year medical student at the Medical University – Plovdiv.

The prize for the best photography went to Maria-Hris Slavova with “Life is Like a Butterfly”. The winner is a second-year medical student at the Medical University – Plovdiv.

An additional audience award went to Veselina Kmetska, who is a student at the Faculty of Medicine at “Prof. Dr. Asen Zlatarov” University. Her work is titled “Nature Draws.”

 

During the event, more than 200 guests were present, including professors from the Medical University – Plovdiv, officials, the awarded medical students and their colleagues, as well as students from two Plovdiv high schools.

Rare Nuances in The Colours of Life

by informer

The Institute of Rare Diseases and the Association of Medical Students – Plovdiv with the support of the National Alliance of People with Rare Diseases and the Municipality of Plovdiv introduced the photo exhibition “Rare Nuances in The Colours of Life” today at the Roman Stadium Square at 11:00 AM.

Students from all Medical Faculties in the country, Bulgarian and foreign language studies, took part in the event. 69 authors’ photos were submitted by doctors, dentists and rehabilitators.

The current competition is held on the occasion of the International Day of Rare Diseases – 28th February – and aims to contribute to better knowledge and understanding of rare diseases to students of medical universities. As well as to increase the awareness and visibility of these diseases in the healthcare system itself and among society as a whole.

Residents of  Plovdiv will have the opportunity to show their empathy for patients with rare diseases by visiting the photo exhibition in the period 20.02.2023-12.03.2023 at the Roman Stadium Square.

 

 

Редките нюанси в палитрата на живота

by informer

Институтът по редки болести и Асоциация на студентите медици – Пловдив с подкрепата на Национален алианс на хора с редки болести и Община Пловдив организират фотоконкурс за всички студенти от медицинските университети в страната с влечение към фотографията и интерес към редките болести.

Медицинската наука е открила между 5 000 и 8 000 отделни редки заболявания, които засягат между 6% и 8% от населението. Въпреки че дадена рядка болест обикновено засяга малък брой хора, общият брой на пациентите с редки заболявания хора в ЕС е между 27 млн. и 36 млн. души. Един от основните ключове за подобряването на грижите към тези хора и техните семейства е повишаването на информираността и видимостта на тези заболявания в самата здравна система и сред обществото като цяло. Настоящият конкурс се провежда по случай на Международния ден на редките болести – 28 февруари – и има за цел именно да допринесе за по-доброто познаване и разбиране на редките заболявания сред студентите от медицинските университети.

Всеки студент, който обича да създава и разказва послания през обектива си, може да се включи, като изпрати своя снимка. Приема се само до три снимки на участник. Фотографиите за участие се подават в бланката за участие, разпространена в официалните канали на Асоциация на студентите медици – Пловдив  – интернет сайт и социални мрежи.

За участие се допускат само авторски снимки, които не са били публикувани досега и не са награждавани в други конкурси. Колажи или кадри с добавени, редактирани или премахнати елементи няма да бъдат разглеждани.

Кандидатстването е отворено от 02 декември 2022 г. и ще продължи до 10 януари 2023 г.

Изпратете своите снимки в бланката за участие: https://forms.gle/WX9Z8ctWHCFttKj79

Успех на всички участници!

Living with spinal muscular atrophy (SMA)

by admin

The focus of the new video series “Living with Rare Diseases” is Spinal Muscular Atrophy (SMA) – an inherited neuromuscular disease, affecting 1 in 11 000 newborns. There are about 160 patients diagnosed with this rare disease in Bulgaria. Thanks to the development of medicine, people with SMA in Bulgaria have access to an innovative treatment since 2019 which provides an opportunity for a better future, if started early on time. See how the lives of Alexander and Nikolinka Matsoeva, the Kunovi family and Malena Vasileva have changed 3 years after access to treatment and how the difficulties have made them stronger and more valuable people!

 

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