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Patient ExperienceRare Disease Day

Rare Disease Day 2022: Rafaela’s Story

By February 24, 2022No Comments

Rafaela Vale is a Clinical Manager at mdgroup, working out of our Brazil office. She specialises in rare disease clinical trials, and has a special affinity to patients and their families dealing with rare diseases. 

For Rare Disease Day 2022, we spoke to Rafaela about how her brother’s rare disease has inspired her career, the impact rare disease has on the whole family, and what more can be done to raise awareness and increase accessibility to rare disease clinical trials around the world. 

Thank you for joining us, Rafaela. In what ways are you proud of working at mdgroup, as an organisation that works so closely with patients and their families impacted by rare diseases?

I am very proud to work at mdgroup. Our main goal is to put the patient at the centre of the clinical trial, as without a patient, clinical research couldn’t exist. We are concerned with giving the best care possible and do this by putting ourselves in the shoes of these families and patients to find diverse solutions. We also ensure comfort throughout the clinical trial journey, so we can provide remarkable experiences for patients and families. I am very proud to be a part of this team.

I have a brother who has a rare disease. He is 19 years old now. I was a little girl when he was born and I remember my parents finding out about his health problems. The first sign was deafness. My family and I had to learn Brazilian sign language to communicate with him and after that, we found out about his other health issues. 

“I truly understand how important it is for us to learn about rare diseases. Because every single patient is different.”

Working at mdgroup really matched my life purpose, because my brother is my inspiration. He’s one of the reasons that I went to college and graduated in biomedical science. During college, I was a trainee at a clinical research site, and that’s when I found out I could match my personal life and my work life. 

I want to help patients and their families because it’s not easy to be a family member of someone who suffers from a rare disease. 

Has your brother been involved in any clinical trials?

Unfortunately, not yet. But I know there is a clinical trial in the US for his disease. However, they don’t recruit patients from other countries in the way that we do. I really want to take my brother to the US so that he can participate in this trial. 

Even though I am not working directly with the rare disease that he has, I know I can help millions of other people who suffer from other rare diseases. I’m happy that I can help people and hopeful that my brother can participate in a clinical trial very soon.

What more can be done to raise awareness and further the medical advancement for rare diseases?

I believe I have two words to describe what can be done – knowledge and empathy. 

“I believe if each one of us carries a little knowledge of rare diseases and empathy to the other, we can share information, reaching the people who otherwise wouldn’t know about these rare diseases.”

It’s really hard to look at someone and see that they are in pain so I also think we as clinical managers or project managers need to be aware that the patient is not just a number, we have to look at the person individually to truly make a difference. 

 

Find out how we’re delivering remarkable for patients taking part in rare disease clinical trials. Get in touch today. 

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