A learning experience: attending CORD (Canadian Organization of Rare Disorders)

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I wanted to share with you my recent and first experience working with CORD (Canadian Organization of Rare Disorders) at their conference last week in Toronto. While feeling totally intimidated with acronyms flying around the room, I managed to gain some understanding of their role in helping those of us with rare diseases.

The 2 day, jam-packed conference gave me some insight into things that are happening in the health care arena in Canada and I wanted to pass along some of what I learned. The panel discussions shed light on what is happening and what is about to happen in the future and participants were able to have a voice and provide input so that the things we felt should be included in any report to the government on this issue would be rolled up in their report.

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Canadian Acromegaly Ambassadors Deanna Badiuk (left) and Dianne Sauvé (right) spread awareness at the Canadian Organization for Rare Diseases conference in Toronto in November 2018

We do have a voice.

Here is what I learned:

Canada is preparing to implement transformations to its “not so national” pharmacare programs. Officials are grappling with the challenges presented by innovative therapies that are transforming healthcare and patient lives. CORD is one of many groups planning to present recommendations to the government on behalf of rare Diseases (including Acromegaly).

Members of CORD, which include patient groups, pharmaceuticals and patients themselves participated in this conference to help formulate feedback and strategies as well as ideas to be encapsulated by CORD and presented to the Federal Government for consideration before implementation of any pharmacare plan is rolled out. Rare diseases do not want to be left behind or forgotten in this new program delivery.

The current healthcare platform is based on last century drugs during a time when there was only a handful of biologics and even fewer drugs for rare diseases. The system was formulated when the human genome was still an idea and embryonic stem cell research was outlawed in the US. A new system has to take into consideration 21st century therapies, equitable access to those therapies and be delivered in a transparent, accountable and timely manner.

Panels, consisting of experts in various fields of healthcare, intellectuals, patients and advocacy group representatives for rare diseases presented their views of how things have been done in the past regarding the process of integration of new drugs, patient access, and delivery of new therapies and drugs throughout Canada. They provided insight and opinion on what the new system should include so that timely access of new drugs and therapies be assured for all patients.

Working in groups, conference participants took the information provided and worked through case studies to formulate plans and processes, that under a new platform, must be included, so that patient access to new therapies and drugs is assured.

It was a very informative conference that left me thinking of how things could change in the future for those of us with rare diseases. I’m happy to have had the chance to participate in these types of discussions and be a voice for those of us with an Acromegaly diagnosis.

Dianne Sauvé
Founder of Acromegaly Ottawa Awareness Support Network

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