My name is Jonathan Pratt. I'm the executive director of the Quebec Coalition of Orphan Diseases, commonly known as the RQMO.
Patients with rare diseases face unique challenges. Their diagnostic journey can stretch on average for four to five years. This journey is often marked by long wait times and limited access to essential resources.
While Quebec and Canada have made promising policy advances, progress remains slow.
There is a lack of coordination of resources across provinces, including medical, financial, patient care, transportation, psychological and community program.
Patients possess a unique understanding of their condition and to improve their care, healthcare professionals must be attentive and open to collaboration.
Healthcare professionals need to listen carefully and collaborate to understand the nuances of the patient's disease and what makes it different from other more common illnesses. If we take the time to listen to our patients to really understand their experience and work with them, then we might have a better chance of helping them.
Sharing data and centralizing information are crucial to improve access to resource and care.
We need to encourage collaboration between researchers, doctors, and most importantly, patients.
This means supporting patients through their regulatory processes to participate in clinical trials and working hand in hand with public health organizations.
For example, RQMO's iRARE Center offers information, resources, support, referrals and education. We also work with researchers to advance knowledge and keep patients informed about the latest clinical trials and treatments.
Raising awareness among the public and the medical community is essential for rare diseases and defending the rights of patients. It's important to talk about it, to raise public awareness, to raise awareness among professionals, to raise awareness among as many people as possible, including our decision makers.
Why? So that things change. So that things improve.