A Tag Team of Rare Disease Education by Kate Salonga

On Saturday, October 25th, I attended the Scleroderma Association of BC’s 2025 AGM and conference. For those unfamiliar - like myself a few weeks ago - scleroderma and pulmonary hypertension have a very interesting relationship, which is why PHA Canada usually has a booth set up at this annual meeting.

Scleroderma is an autoimmune disease that causes hardening and/or thickening of the skin and internal organs. Sound familiar? That’s because scleroderma patients are at risk of developing PH . This is why it’s important to ensure our fellow patients stay informed and educated in case they start experiencing the same symptoms we all have, and perhaps even one day have to be on the same treatments, or even have to join our fight to expedite sotatercept’s provincial approvals.

SABC’s conference covered a lot of relevant content for myself as a PH-er, including a deep dive into nutrition and inflammatory foods hosted by Vanessa Cook (a naturopathic medical intern) and a look into Canadian research by Dr. Maggie Larché, MRCP(UK), PhD. They even had a table set up for one of their research teams collecting photographic data for an AI diagnostic tool. A common theme was brought up: “Who starts the fight?” - a cheeky reference to the autoimmune nature of the disease and the gamble of anything starting a possible flare-up.

The staff and volunteers were all very welcoming, and by the sounds of it, most patients had at the very least heard of PH and did mention they had breathing tests done regularly. But the booth wouldn’t have a little SquishyLungSyndrome flare if I didn’t leave my spare pump on the table for people to ask about if they felt brave enough. I found this to be a great spark to continue initial conversations, because, as old news as it is to me, there are lots of people who have never heard of things like infusion therapies.

My takeaway from the conference was simple: rare diseases share so much in common, the same struggles, the same barriers, the same dire need for funding for treatments to help make the life of the patient more manageable, more life -like.

For more information on Scleroderma & PH, check out this helpsheet by PHA Canada.