International Rare Disease Day: Alex’s Story

International Rare Disease Day story with Alexandre Grant Meakins-Christie Laboratories

At the RI-MUHC and the Meakins-Christie Laboratories, we care about rare diseases. Alexandre Grant is a research trainee who received a rare disease diagnosis at the age of 20.

Read Alex’s Story:

Beyond basic research: Coming to grips with a rare disease experience. To honour Rare Disease Day on February 28, an RI-MUHC research trainee shares the perspective he gained as a patient. RI-MUHC News. February 24, 2022.

Message from the RI-MUHC Consortium for Rare Disease Research.

February 28 is “Rare Disease Day”, a day where the MUHC and RI-MUHC celebrate the many who are working towards providing accurate diagnoses, shortening the diagnostic odyssey, translating discoveries into therapies and seeking cures for those families affected by rare diseases.

Under normal circumstances, the greater MUHC community convenes on this day, with patient advocacy groups and industry partners, to hear from clinicians and scientists about ongoing discoveries, and from patients to hear their testimonials.

Unfortunately, with an ongoing surge from the COVID-19 pandemic, in-person gatherings are a major concern for public health safety. As such, the MUHC Consortium for Rare Disease Research has taken the difficult decision to not hold our Rare Disease Day event on February 28 2022.

However, we will continue to recognize the MUHC Rare Disease Community by highlighting some of our clinicians, scientists, and patients.

We remain committed to uniting our expertise, our experience, and our voices, to advocate for all those affected by rare diseases.