With a long-held ​commitment to advocacy, and familial experience of rare disease, Durhane Wong-Rieger became CEO of the Canadian Organization for Rare Disorders (CORD) in 2012. She talks to RARE Revolution about the challenges that lay ahead as a result of the COVID-19 pandemic, and about the fundamental importance of collaboration for rare disease

CEO Series: meeting the beating hearts behind the RARE brand

1.

What made you want to move into the wide world of rare disease, and then specifically Canadian Organization for Rare Disorders (CORD) and what did that journey look like?

I have two children who were both born with rare conditions. Different conditions that had very different pathways to diagnosis and treatment. My daughter demonstrated physical and cognitive challenges at birth, including low muscle tone and inability to make contact. Her symptoms could have aligned with many conditions but we could not achieve a specific diagnosis. She did get a diagnosis of thalassemia minor at age two but that could not explain the other symptoms which we learned to manage with rehabilitation and supplemental educational support. At the time, advanced genetic testing and importantly genomic testing were not available. My son was born with a congenital heart defect, diagnosed at birth and he had a clear monitoring and treatment pathway, at least until he reached 18 years of age when the paediatric cardiac system dumped him into adult cardiology with absolutely no expertise or support for childhood heart conditions.
 
These personal experiences have helped me to understand the needs of rare disease patients and families but were not the precipitating factors for taking on the role. I am actually a psychologist by training and taught about 20 years in university, doing patient advocacy on the side, until 1999 when I left academia to take on advocacy full time. I was a volunteer for the Canadian Organization for Rare Disorders (CORD) for many years, and initially asked to write a Canadian ‘orphan drug policy’ (similar to the USA and EMA policies) for CORD to use as advocacy with the federal government. I became Chair of the board to lead the advocacy for the policy but also to fight for access to rare disease drugs, which were coming to Canada but having tremendous challenges getting funded in the public drug plans. I transitioned to a part-time executive director role on 2012 and have remained in the position to this day.
 
I have had a lot of international patient advocacy experiences and the contacts are essential in rare diseases. In 2015, I helped to establish Rare Disease International, the global alliance of rare disease organisations to advocate for and effect change on behalf of rare diseases in the global environment, for example, setting up a Non-governmental Organisation for Rare Diseases in the United Nations, achieving a specific reference to rare diseases as a target group within the UN Document on Universal Health Coverage, and signing a Memorandum of Understanding with the WHO to advance rare diseases.

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

​I wouldn’t have said this at the beginning of the year, but it is clear that we need to keep focus and progress in the midst of the COVID-19 pandemic which threatens to overwhelm all other health issues and usurp all funding and services.
 
One of our biggest advantages and opportunities comes from having a united global community so we can work and speak with a coordinated voice, within the patient community but also across sectors. Rare diseases have always reached out to other entities, including disabilities, noncommunicable diseases, healthcare professionals, policy makers and developers. Indeed, technology is our other biggest asset, with advances in genetics, drug discovery, gene therapies, and digital health. Finally, there are integrated international platforms, including centres of expertise, collaborative research, data sharing, and patient engagement.

3.

What is your proudest moment in your career thus far?

Really? I couldn’t say. In this world, there are no individual achievements but only contributions to coordinated and collaborative efforts. What we do at CORD is borrowed from other national organisations and we have increasingly been a source of initiatives for others. CORD is an alliance of patient organisations and we work with the community which translates our work into the grassroots which also support our efforts as an alliance. We also have effective rare disease groups at national and international levels that are much bigger than us so we leverage our efforts off of their support.

4.

What and who are your personal and professional inspirations and why?

Mostly patients, parents, and families who are trying to improve their lives in the face of overwhelming challenges on a daily basis. In addition to my children, I have a husband with Parkinson’s Disease, Familial Hypercholesterolemia (heart condition), and achalasia (motility disorder) with the most positive outlook.
 
Of course, there are a lot of leaders in the rare disease world and beyond who have been instrumental in advancing our collective cause. Yann LeCam, parent of a child with cystic fibrosis and ED of EURORDIS, Abby Myers, mom of a boy with Tourette’s syndrome and patient champion for USA Orphan Drug Act, Pat Furlong, Duchenne Muscular Dystrophy mom who learned how to crack the professional and policy world and has remained at the forefront even after both of her boys have passed away. Many many more who transformed their personal passion to action on behalf of all.

5.

What advice would you give someone considering working in the rare disease space?

​You can only work in this space if you have the personal passion for it. It doesn’t mean you have to have a personal relationship to rare disease but you have to commit as much as someone who does.

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

What the government (Canada and most other countries) does is actually work against the rare disease community. Policies that work for the majority and common conditions are applied to rare diseases and work against access and support. It would take volumes to illustrate all the ways but what has been most public is the access to therapies, which are individually expensive but cost-effectiveness is calculated using the same yardstick as for common conditions.
 
There remains a lack of training for healthcare professionals, there is no national strategy (as there is for cancer, cardiovascular disease, diabetes and mental health) even though collectively there are more patients with rare disease than any of these conditions.  There are 7,000 rare diseases affecting nearly 3 million Canadians but no dedicated resources.

7.

What would you say are some of the biggest motivators for your employees? 

​Everyone who works for CORD and most of our Board members and volunteers have a personal relationship to rare diseases. Passion and first-hand knowledge of the challenges and benefits.

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding? 

Everyone thinks you know what you are doing (and of course you want to project this image) but really you don’t and are making it up as you go along, If you are lucky, you see opportunities and can take advantage of them, so for us, it is important to be agile. We cannot have a traditional three-year strategic plan (although my board keeps asking for this), because the environment is constantly shifting, both in terms of challenges and opportunities. So we need long-term vision and strategic direction but not plans that have to be rigidly followed.

9.

What would be your one wish for CORD for the year ahead?

​In 2019, the federal government promised us a $1 billion ‘start-up’ budget to set up Canada’s Rare Disease Drug Strategy. This complements a commitment from P/T gov-ernments to set up a special pathway for access to Drugs for Rare Diseases, in the form of a managed access scheme. Now all government actions have stalled in their pivot to COVID, so we have to pick up the mantle and lead the development ourselves, bringing together all the stakeholders, so we are in place with a strategy and plan for 2022 when the monies were promised to be available. That is what we need to accomplish in 2021.

10.

If you weren’t CEO of CORD, what was Plan B?  What did your 10-year-old self want to do as a job?  

My guidance counsellor said I had way too many options and ideas and my biggest challenge was to focus on one thing and do it well. So here I am.