Conference season is well and truly underway. I just wanted to take the opportunity in this blog to talk about the amazing opportunities and experiences you can have while joining conferences, family days, or other initiatives from patient organizations.
At the end of last month, I had the chance to virtually attend the CMTC-OVM Global Conference, which is always an incredible display of cutting-edge research matched with emotional and mental health support. The chance to meet people with your condition as a rare disease patient never gets old. I have spent so much of my life being told, I am the only one in my clinic, or the first my team has seen, that to walk into a room full of patients and families with my condition, or conditions like mine, is still such an emotional and spine-tingling experience. This conference always balances the critical research with opportunities to connect with the community and take part in some incredible sessions. I have always enjoyed how the conference also has hands-on activities, which I find sometimes can help break the ice when you are meeting new people. The conference also has a strong focus on the mental and psychological health of patients and families, which can be missed in more clinical conferences. This is such an important part of a complete health picture that this conference never fails to address.
I always love this time of year because at the end of October, you have a disease-specific conference, and then at the end of November, Canada has their national CORD conference. This is a broad-ranging conference on rare diseases in Canada and how things are changing in the complex systems of Canada’s federal and thirteen provinces/territories governments, combined private/public payer systems, and patient group interactions. This conference always leaves you inspired to change a broken system for rare patients. This is a conference that highlights the diversity of rare diseases, research, drug availability, and provincial impacts on different rare diseases. This is often a dense conference that can feel overwhelming, but it always tries to leave you on a hopeful note as we face these complex barriers.
It’s an amazing opportunity to attend such an uplifting conference, such as CMTC-OVM, that fills your heart and soul with such warmth and power. Then, to join in the CORD Conference about the very real practical challenges that impact my home country and leave you with a mentally challenging discussion, which can be demoralizing, but also leads to such positive change. The juxtaposition can be shocking in a way, but I find it really highlights the realities of living with a complex, rare disease. Though they are very different conferences, with different goals, impacts, and focuses, both provide critical information and fulfill patient needs. Overall, I highly recommend that if you have the chance to take part in any conferences, patient days, or other social experiences in your disease community, they are incredible opportunities for not just you, but also your community.