Guest blog: CORD and Rare Disease Day

Durhane Wong-Rieger, President & CEO of CORD (Canadian Organization for Rare Disorders), has kindly shared this guest blog explaining why this year is so important for CORD and how they will be getting involved with Rare Disease Day 2020. 

Rare Disease Day 2020 – A Significant Watershed

Every four years, International Rare Disease Day falls on that rarest of days, February 29th.  This year 2020 is one of those rare years, and the Canadian rare disorders community has even more reasons to celebrate.  Five years ago, the Canadian Organization for Rare Disorders launched Canada’s Rare Disease Strategy in collaboration with multiple stakeholders representing patient organizations, researchers, healthcare institutions and professionals, policy makers and industry. In 2020, we will update the strategy and action plans based on progress to date and identification of opportunities, priorities and synergies.

Why is a Rare Disease Strategy necessary?

While each rare disease affects only a small number of individuals, there are more than 7,000 rare diseases that together affect 1 in 12, or nearly 3 million Canadians. However, awareness, knowledge and treatment of most of these diseases are still limited and fragmented across the country. As a result, individuals face a host of extraordinary challenges, including misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death.  All of these challenges lead to increased morbidity, loss of life or poorer quality of life and increased costs to the family, the healthcare system and ultimately the Canadian economy.

Bringing Canada’s Rare Disease Strategy to Life?

The year, 2020, is also the Chinese Year of the Rat … the most auspicious of years, signaling the start of a new Zodiac Cycle and also a time for “new beginnings.” Throughout 2020 and 2021, CORD will be bringing together all partners and stakeholders to build Canada’s Rare Disease Drug Strategy, to be ready for implementation when federal government’s promised $1 billion fund becomes available. We will use this time to “pilot test” the Canadian “supplemental process” for access to rare disease drugs and develop processes and templates for implementation.

We begin the process at our 2020 Rare Disease Day Conference to be held on 9-10 March in Ottawa with a Gala on the evening of 9 March. We will also organize an “Action Day on Parliament” where patient advocates will meet the Members of Parliament.

Prior to that date, on 3 March, CORD patient advocates will host our annual Queen’s Park Rare Disease Day Breakfast and also convene at Question Period to raise awareness among the Members of Provincial Parliament.

Numerous other events will take place in provincial legislatures, hospitals and community settings across the country.  A calendar of events will be available on the Rare Disease Day website: https://www.rarediseaseday.org/

RepeatDx will be supporting Rare Disease Day 2020 on our Facebook and Twitter accounts, follow us to make sure you don’t miss anything!

To learn more about why we want to show our support read this blog.