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In this week’s blog, we would like to introduce you to our new volunteer, Marco Gallotta. Marco joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.

Hi there Marco. Please can you tell us about yourself?
Hello, I am an international student (from Italy) currently on my way to the third year of a biomedical sciences degree at the Royal Holloway university of London. I enjoy trying ALL the food and dabble in cooking. I have done Contact sport almost all my life, a lot of karate as a kid and I’m currently doing Thai boxing. I’m also a big nerd and love science and games.

Had you heard of rare diseases before your placement?
I did, I actually wrote an essay about Gaucher’s disease for one of my courses, which was eye opening and gave me a new perspective about the difficulties that patients, doctors and researchers face when stepping into the fields of rare diseases.

I also came across a few rare mitochondrial diseases while studying bioenergetics, and more neurological and neuromuscular disorders in other courses. It was really university that opened the door on this world for me. Before that I had rarely even heard anyone talking about them, which goes to show to kind consideration they are given, and the level of awareness outside the field.

What motivated you to take up the micro-placement at Findacure?
Many things, If I had to boil it down to one, I would say it was the best opportunity I had to create something useful.

Rare diseases are in a tricky situation regarding how much medical help they can get. Developing drugs is an extremely expensive and long process. We are talking about hundreds of millions of pounds and years of work of hundreds of people, for just one drug!
The monetary returns on rare disease are not very lucrative for companies, so they are not incentivised to invest in research and development for them. Consequently, the attention of all those that provide services for patients are more skewed towards common diseases, they are easier to cure, more tools are available, and more money is involved. Everyone has to make a living at the end of the day.

I thought that lending a hand and working with a charity would be useful and also would give me insight in this very important but not so considered side of society. Even in my little time at Findacure, maybe I am doing something meaningful for someone. That is it, if I talk anymore I will start rambling incoherently.

What have you been working on?
I have been writing a guide on nutritional management for people affected by rare diseases. I am by no means knowledgeable in the field, but I have some more insight into nutrition than the average person due to my personal interest and ability to extrapolate info from scientific papers. I interviewed people from 3 different rare disease associations whose patients have to manage their nutrition in different ways, that gave me a great insight into what an upcoming patient group can do to build their own package of nutritional knowledge and how to distribute it.
I also worked on a guide to give an outline on how to read a scientific paper. I think that patients should have the tools to understand the reasons behind the decisions of their medical advisor, at least to some extent.

What have you enjoyed most about your two weeks in Cambridge?
1. Without a doubt the Korean food from a restaurant near my hotel, would recommend 10/10.
2. Mostly I enjoyed the city centre, walking between the old buildings, cobbled streets and parks was great.
3. I also recommend visiting the zoology museum, good choice if you like animals, perfect if you like bones… a lot of bones.

Marco’s fortnight at Findacure

by Guest Contributer time to read: 3 min