Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

Guest blog post by Mariné, Leila and Sofia.

Our work experience team consisted of two psychology undergraduate students (Mariné and Leila) and a school student studying art and design (Sofia). We are grateful to have had the opportunity to work with the Myrovlytis Trust team and assist with their upcoming projects. Myrovlytis Trust is an amazing organization passionate about raising awareness for rare, underdiagnosed diseases.

On our first day we were introduced to the BHD foundation, and its efforts to raise awareness for the inherited disorder, Birt-Hogg-Dubé syndrome. We were taught the program Canva, a graphic design software which was incredibly useful throughout our work experience. We were assigned the project of organizing the campaign for ‘Mystery Monday’, to encourage greater attention to rare diseases like BHD. This involved researching organizations and charities who would respond and hopefully retweet our posts on platforms such as Twitter and Facebook. Accompanying these posts, we designed images on Canva to encourage further interaction.

Leila and Mariné: Alongside working on the Mystery Monday project, we, as undergraduate science students, were given the chance to take part in the summary of clinical trials for osteosarcoma. This entailed reading and rewriting the content into a simplified format for those with a non-medical background to easily understand. As we are both interested in further education into clinical research, this was a great opportunity for a real-life experience in reviewing current osteosarcoma research.  

Sofia: While Leila and Mariné were working on the clinical trial summaries, I was given the task to select images for the osteosarcoma website. I thoroughly enjoyed finding pictures for the three sections: the home page, blog post and clinical trials. This experience has taught me the importance of visual material in drawing one’s attention and has developed my interest in the production behind building a website. Using Excel, I wrote the title of these images to keep a record of them on a spreadsheet, this was useful in creating an organized plan for the website images.

We appreciate the Myrovlytis Trust for taking us on this week, it was an enriching and inspiring experience!