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Board member Joan Paulin and PHA Canada Ambassador Jennifer Bryson attended the Rare Disease Summit hosted by the Canadian Organization for Rare Disorders in Ottawa, Ontario. PHA Canada asked Joan to share highlights of this important conference.
What an exciting two days at the Canadian Organization for Rare Disorders Rare Disease Day Summit! On the rarest of days, Feb 29, Rare Disease Day, we had an opportunity to meet with MPs to talk about all things rare – the burden of illness on patients and caregivers, the long diagnostic odyssey, the long wait for access to new therapies and the importance including the patient voice and experience when the making the decisions that affect patient health. 

On Day One, Feb 28, we had an opportunity to meet some amazing people. We connected with patients and caregivers from other rare disease communities, reinforcing our unity as a community of patients despite the rarity of individual conditions. Their journey is our journey. We met clinicians working hard to bring earlier diagnosis, care and treatment to patients living with rare diseases. And as much as we rail against industry for the price of therapies and government for the delays in access, we met some of the people behind these big organizations – and they, too, are us. If they are not personally afflicted with a rare disease (and some are), it is incredible how many of these people personally know someone, or some family, that is. 

Joan had an opportunity to provide the first patient perspective on a late morning panel. While she talked about areas that she has seen progress in since her daughter was diagnosed with PAH in 2014, Joan also addressed areas that she feels progress still needs to be made, especially as it relates to the National Strategy for Rare Diseases. The most impactful part of her speech focused on patients. She reminded everyone there that people living with rare diseases and their families are experts on the diseases that affect them. She reminded decision-makers and patients that the data patients and patient organizations gather through registries and biobanks will not only inform immediate care but that this information has the potential to provide an improved understanding of the progression of the disease and future avenues for research. She advocated for a Strategy that includes patients' lived experience in treatment decisions, patient education on the importance of their data, and patient empowerment that allows patients to have a seat at the table when the decisions about their health are made.

Day two focused on advocacy and awareness activities in the morning before closing the summit, with discussions about launching the Canadian Rare Disease Network and sessions about coordinating rare disease care across Canada and creating expanded, accelerated, and sustainable access.

We started the day by attending a breakfast reception with members of Parliament, senators, and staff but the highlight of the day was our march to Parliament Hill, a powerful demonstration of our collective strength and determination. We were joined by members of the public, and we made our way to Parliament Hill, where we met with members of Parliament from all political parties. Our message was clear: the delay in providing more equitable access to medications for rare disease communities, despite the promise made four years ago, is unacceptable. We wanted them to know we are watching and waiting and will hold them accountable.

Although the summit is over, our work continues. 

CORD is currently running an online campaign entitled "Fight for Our Lives" so that you, too, can let your elected officials know that access delayed is access denied. Join us and so many other Rare patients and caregivers in making sure that our elected officials know that no matter where we live in Canada, Rare is watching, and we are calling for action. Please go to and complete the petition. 
> Canadian Organization for Rare Diseases

> Rare Disease Drug Strategy 
Rare Disease Day Summit Recap: Advocacy, Unity, and the Fight for Equitable Access

Joan Paulin, Caregiver, Advocacy

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