Read the following interview to find out more about Aldo Soligno, a #RAREvolutionary documentary photographer.
1) Hi Aldo, thank you for your time. You are a special guest for the RE(ACT) Community: not a researcher, not a patient but a documentary photographer involved in the rare disease scenario. Could you tell our readers something about your passion which is now your job?
Photography is the form of expression I’ve chosen to document themes I am interested in. It is my way to communicate and to access different realities. I have no interest for a single photo, I want to tell a complete story summarizing several emotions and information into a photographic reportage.
2) Rare Lives is a photographic journey among European 70 families involved in the rare disease world. Can you give us more details about the idea of the project?
Back from Haiti, I decided to start this new project. I thought that documentary photographers like me are always active in far countries, but it is difficult for them to focus their attention on the nearest problems. I wanted to find a symbol to describe the welfare situation in Europe: the rare diseases patients represent a minority I wanted to give a voice to.
3) Did you have find any difficulty during the three years you spent working on the Rare Lives project?
I was so lucky to have the possibility to work with Uniamo, the Italian Federation of Rare Disease. I didn’t find any problem or barrier during my work because Uniamo had previously chosen the families that I could meet, selecting the ones which were willing to share their stories and join the project. Families have trusted me, giving me the opportunity to access their lives, to follow them in their private moments.
4) How has your life changed after this experience?
This experience has had a great impact on my life. All the stories that I have collected are inspirational sources and examples that could give me the strength to overcome any possible problem in the future. We have received positive feedbacks and messages from patients’ families who have been stimulated by my shots to react and to find new possibilities to better deal with a rare disease.
5) You are the winner of Eurordis Media Award 2017 for the Rare Lives photo project. Could you tell us what this award means for you and which was your first feeling when you received it?
I didn’t expect to win the Eurordis Media Award. Uniamo candidated Rare Lives when I was very busy during the last period of the project. It was a very emotional surprise because we won together: me, Uniamo, Sanofi Genzyme and all the families that have joined the project opening their lives to me.
6) Which do you think is the way to create awareness about the importance of supporting the scientific research through concrete actions like donations?
Everyone knows how important it is to support scientific research, but only few people act and contribute in a concrete way. The possibility to meet the patients during the Rare Lives project has allowed me to see the real impact of the research. Pamela diagnosed by Glycogen storage disease is now alive thanks to a drug developed in the Netherlands. Supporting research really means saving lives and this is what people actually need to understand.
7) In which way the families you have met use digital media to share info about rare diseases? What do you think about Internet to exchange knowledge about this topic?
The families I met use digital media to stay in contact and to communicate with patients that have the same pathology. For example, they share experiences related to a specific disease they are affected by in private groups on Facebook. It is important to open the door of the private groups, because there are lots of useful and precious information for the whole world of rare diseases. The only thing I’m afraid about is the possibility to find misleading information on the Web that can be dangerous and difficult to be identified as wrong. However, I think that digital media are a powerful instrument for researchers and doctors.