Formal part: 2021 Rare Disease Database Regional Conference

See how this year’s opening of the 2021 Rare Disease Database Regional Conference looked like. Who were the speakers and how did they support the work of our project.

Working part: 2021 Rare Disease Database Regional Conference

Watch the working part with simultaneous interpretation of this year’s Regional Conference Rare Disease Database 2021.

Workshop No. 1: Equal Aspects of Social Protection of Persons with Rare Diseases (Conference 2021)

Watch the Workshop “Equal aspects of social protection of persons with rare diseases” led by Ivana Golubović, coordinator for patients and patient representatives of the Rare Disease Base.

Workshop No. 2: Neonatal screening for rare diseases in the Balkans, experiences and perspectives

Watch the Workshop “Neonatal screening for rare diseases in the Balkans: experiences and perspectives” led by Dr. Dragica Radojković, coordinator for cooperation with health workers of the Rare Disease Database.

Workshop No. 3: Orphanet Knowledge Base of Rare Diseases (Conference 2021)

Watch the Workshop “Orphanet knowledge base of rare diseases” led by Dr. Maja Stojiljković, assistant coordinator of Orphanet Serbia

Regional Conference “Rare Disease Database 2020”

The first regional conference “Rare Disease Database 2020” brought together relevant interlocutors from the entire region on the topic of rare diseases and the importance of networking between doctors, patients and patient associations. The public had the opportunity to hear representatives of health institutions, competent institutions and patient associations from as many as five countries: Serbia, Montenegro, North Macedonia, Croatia and Republika Srpska.

The database of rare diseases is a regional project aimed at shortening the time to diagnosis, networking health professionals, patients and patient associations, while providing broad support to patients suffering from rare diseases and their families.

Patient Support Webinar: Introducing the Drug Development and Clinical Research Process

Of all the diseases in the world, only 5% have therapy – that means 95% don’t! Patients and their families facing rare diseases often hear about clinical research (testing), without understanding what that process entails. Lack of awareness and understanding is recognized as one of the biggest barriers to patient participation in clinical research. The purpose of this webinar is to explain the process of developing new drugs, as well as what it means to participate in clinical research. Our goal is to help educate patients and their families dealing with rare diseases by providing useful information about what clinical research means.

Topics covered in the webinar include:

• An overview of the complete process of developing a new drug, including an approximate time frame
• Different phases of clinical research
• Clinical research terminology

Note: translation into Serbian and Macedonian is provided for the webinar. It is necessary to select “Subtitles/CC” in the lower right corner of the screen, on the symbol with a wheel, and by clicking on the arrow to the right, select the desired language.

Patient Support Webinar: What Does Participation in Clinical Research Look Like?

After explaining the field of drug development in our first webinar (link: https://www.youtube.com/watch?v=2FilhdxX6_o&t=2032s…) our second webinar focuses on what it means to participate in clinical research, with an emphasis on the patient’s perspective. It is extremely important for patients and their families to understand what they are getting into, in addition to their obligations and rights, if they decide to participate in clinical research.

Topics covered in this webinar include:

• The importance of clinical research
• Observation and reporting process
• The “informed consent” process
• Rights and obligations of clinical research participants
• Logistical challenges and possible solutions

Note: Serbian and Macedonian translation is provided for the webinar. It is necessary to select “Subtitles/CC” in the lower right corner of the screen, on the symbol with a wheel, and by clicking on the arrow to the right, select the desired language.

Patient Support Webinar: What Does Participation in Clinical Research Look Like?

In this webinar, Bojana Mirosavljević’s interlocutors shared valuable insight into the process of how research takes place, with the participation of patients in the early stages of clinical research. The focus is on patient priorities, as well as challenges that exist during these processes.

The speakers are:

• Inês Alves, DMV Patient Organization Representative Advisory Board, Rare Diseases, Ergomed
• dr. Alex Artyomenko Head of Rare Disease and Real-World Evidence Departments, Ergomed

Moderator:

• Bojana Mirosavljevic Patient Engagement Officer, Ergomed

Note: Translation is provided automatically. To get the translation into the desired language, click on the wheel symbol in the lower right corner of the screen. After that, select the option “auto – translate” and from the offered options, select the language in which you want the webinar translation.