We are glad to introduce our #RARETalk guest Dr. Daria Julkowska. Read the following interview to find out more about her experience as E- Rare coordinator.
1) Welcome to the RE(ACT) Community Dr. Daria Julkowska. You have a scientific background, you are the E-Rare coordinator and you also have other important assignments in the rare disease field, can you please tell our readers more about yourself?
I have a PhD in molecular biology and additional background in cellular biology. My “adventure” with rare diseases started during my post-doc at Institut Pasteur where I had a chance to collaborate with the group of Helene Dollfus (University of Strasburg, France) who is working on ciliopathies. At that time I did not know that rare diseases will become an integral part of my work. In the meantime I did some additional training in communication, research management and European Union. After finishing my post-doc I had a chance to get the job of project manager for E-Rare ERA-Net for Research Programmes on Rare Diseases. It was in 2010 and since then I am involved in the program. In 2013 I took the responsibility of the coordination.
2) E-Rare is the ERA-Net for Research Programmes on Rare Diseases. Can you please tell us more about your research program and goals?
E-Rare was implemented in 2006 to gather national/regional funding organizations to create a common funding programme for rare disease research. It started with 8 countries but since then E-Rare evolved and currently comprises 26 public bodies from 18 countries: Member States (Austria, Belgium, France, Germany, Greece, Hungary, Italy, Latvia, Poland, Portugal, Romania, Spain, The Netherlands), three Associated Countries (Switzerland, Israel and Turkey) and two non-European countries (Canada and Japan). Every year E-Rare launches so called joint transnational call for projects on rare diseases. Our funding activities resulted in financing of 106 multinational research consortia involving 498 research groups. 92 M€ were invested in these projects. Today E-Rare is clearly recognized by the research community as important program complementary to national and European funding schemes.
3) We launched an international petition called #RAREvolution Petition asking more support for rare disease research. How important do you think it is to advocate and improve resources for research on rare diseases?
We support the #RAREvolution Petition. It is important that adequate resources are provided to rare disease research. And it is not only about money, but also about relevant connections of rare diseases stakeholders like patients, regulatory bodies or private sector.
4) You co-organized, with the BLACKSWAN Foundation the RE(ACT) Congress in March 2016 and you will collaborate for the next one in 2018 as well. How these type of conferences help researchers in their work?
For us RE(ACT) Congress is a wonderful place to enhance networking, present results and discuss topics that are common for all domains of rare disease research. The consortium of E-Rare agreed that such partnership is the best way to respond to the demands from the scientific community, which claimed more place and time to discuss their work and interact with relevant stakeholders.
5) The online RE(ACT) Community encourages both researchers to publish scientific info and patients to share their personal health experiences. What do you think about health knowledge sharing to push research forward? Can digital media help this process?
Clearly, yes. The digital media are part of our lives and often play important role for patients but also new generation of researchers. Unfortunately at present, the gap between researchers working in their lab and patients is too big. You can spend the whole life working on a scientific topic that is related to a rare disease and never be able to interact with a person living with this disease. Platforms like RE(ACT) Community can help in this connection. The transmission of information is part of mutual learning process, which helps in accelerating research.
6) Can you please share with us three things you have learned from your personal and professional experience that can help rare disease researchers and patients?
Rare diseases community is a very special place built by passionate people. Every day I am impressed how much commitment of individual persons can change things at large scale. So it is central to remember that every contribution is important. I also learnt that because of the fact that rare diseases are so infrequent and geographically scattered the community must face additional challenges like for example cultural differences. And you cannot always apply the same model to all. That is why you need to be open and solution driven. It is very enriching experience making you see your every day life differently.