Michael Maalouf Description

  

The Rare Disease Interest Group (RareDIG) is run by medical students at McGill University in Montreal, Quebec, Canada.  Its Director is Michael Maalouf, who speaks with the @CancerInterviews podcast.  The students seek to raise awareness for rare diseases, including rare cancers, such as Lynch Syndrome.  Michael says there is oftentimes a lack of representation for those diseases, especially when it comes to diagnosis and treatment.  He says RareDIG wants to enhance awareness for those in the early stages of medical school.

 

Michael Maalouf is from Toronto, Ontario, Canada, and studied at the University of Toronto.  It was there that he conducted research at the city’s Hospital for Sick Children, and learned a lot about rare diseases.  His research led him to medical school at McGill and in 2017, RareDIG was formed.

 

While studying at the University of Toronto, he saw how in many instances, when a child was diagnosed with a rare cancer, doctors could not pinpoint what type of cancer it was, and then, once they did, they were unsure how to treat it. 

 

Since joining RareDIG, Michael Maalouf has spoken with medical students across North America about rare diseases.  He says in his experience, once he shares the challenges of raising rare disease awareness with medical students, they want to learn more.  Michael is optimistic about increased awareness because when he shares what he knows with other students, they want to share what they know with still more students. 

 

Michael says increased awareness has to come not only from medical students, but from established members of the medical community.  To maximize this message, he says groups like RareDIG have to target it in a way to get the best possible outcome.  For instance, rare disease advocates approach an established cardiologist, they need to highlight rare diseases in cardiology, such as arrthymias.

 

A rare form of colorectal cancer is a syndrome called Lynch Syndrome.  Perhaps one or fewer people out of 10,000 are diagnosed with Lynch Syndrome, but Michael says if you add up all the rare cancers, they account for 22 percent of all cancers diagnosed worldwide.  Bringing that statistic to light is part of RareDIG and similar groups creating awareness.

 

In addition to medical students and established health care professionals, Michael says the attempt to increase awareness needs to involve pharmaceutical companies.  For that involvement to materialize, the pharmaceuticals need to be motivated to research rare cancers instead of tackling a cancer that has a much higher profile.

 

In the meantime, RareDIG is working hard to connect with medical schools at universities across North America so that they amplify RareDIG’s work.

 

Additional Resources:

 

Rare Disease Interest Group: https://www.raredigmcgill.com