Rare Disease Month - Tania's Story - MRN

Rare Disease Month – Tania’s Story

Hello, my name is Tania. I am a home nurse working in clinical trials.

A few years ago, I decided to be part of this wonderful team. I confess at the beginning I was a little scared, I didn´t know how I could meet the goals that was necessary to do the job well. Little by little I realized that if I do my work with enthusiasm to make this world better, it´s enough to start off well.

I was looking forward to helping patients with rare diseases, and this led to a fantastic and updated training with a thorough follow-up from the MRN team to achieve the goals. I really am the practical part of the research, I am the “hands” of the wonderful team that brings the “brain”. Both of us put in the “heart” and in this way, the hands, the brain, and the heart give life to a machine that works every day with great strength and enthusiasm in search of efficiency.

Working every day with patients who have rare diseases, has made me grow professionally and personally. I broaden my knowledge to achieve the efficiency of my work and to make a reality. MRN has been a challenge and at the same time, a path filled with hope to get positive results that are wanted by everybody. Personally, I believe I cannot describe in words the feelings and emotions that are created when working with these patients.

In my case, I work with pediatric patients, I see week after week their fight, their hope, their evolution, and I cannot help but feel empathetic and affection for them. There are some hard days where you see the disease´s signs like a professional. You enter the door wishing to see a positive change or simply “I am well” when asked “how are you?”

The family is also a fundamental part, because their support is essential for our work at home to make sure we do the best work possible. They open their doors to their home and lives to us with the hope and appreciation layed out before us. They create an ideal bond of trust and affection between nurse, patient and family. Yes, everything has to turn out well, we have to do it for them!
I would like to also thank my coordinators for treating me always so friendly and closely, and for their impeccable professionality.

Huge thanks to Tania for sharing her story to celebrate Rare Disease Day 2023!

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