To celebrate Rare Disease Day 2021 (February 28), Takeda is highlighting stories of “Rare Star Resilience” and honoring inspirational members of the rare disease community. Through this campaign, we share the unwavering commitment of five patients, families, caregivers, healthcare professionals and patient advocates who continue to inspire us in a particularly turbulent time.
Rare is strong. Rare is proud. Rare is many. Rare is resilient.
We sat down with Durhane Wong-Rieger, who is president & CEO of the Canadian Organization for Rare Disorders (CORD), an advocate for those with rare disease across many national, regional, and global organizations, and mother to two children with rare diseases, to speak about the tenacity of the those touched by rare disease and the opportunities for the community amid the COVID-19 pandemic.
A message of resilience from Durhane on Rare Disease Day 2021:
The word I would apply to rare disease community, and myself, is tenacity. Rare teaches us how to persist, not give up. We are the embodiment of the saying “When the going gets tough, the tough get going.” Rare means we can and we will succeed.
I am the President and CEO of the Canadian Organization for Rare Disorders (CORD); Chair, Rare Diseases International; President, Asia Pacific Alliance of Rare Disease Organizations; and Chair of the Patient Advocates Constituency Consortium for IRDiRC (International Rare Disease Research Consortium). I am also a parent to two children who have rare diseases, each with their unique journeys.
I have two children born with rare conditions and both had very different journeys; one undiagnosed presenting with multiple physical and cognitive symptoms; the other with a diagnosed heart condition that had a management pathway. As parent advocates, we learn to be the child’s expert and to navigate not only the healthcare system, but also education, rehabilitation and support services to find what is available.
Sometimes we have to “create” resources where there are none. Just as important, along the way we are contributing to developing the community – in a way supporting others with similar and also dissimilar challenges. Later, when my husband was identified as having a congenital heart condition, developed Parkinson’s Disease, and also a rare motility disorder, we more or less took it all in our stride. We just shifted our focus to deal with new challenges as they evolved and used the lessons we learned from managing rare diseases.
As a rare disease community in Canada but also internationally, we had carved out significant challenges and have taken advantage of opportunities that we had been working on for years. Dealing with the COVID-19 pandemic was NOT the biggest obstacle for patients and families, as well as our patient organizations and alliances. There were things we were determined to continue to move forward, despite changes caused by the pandemic, on behalf of rare diseases – coping with COVID-19 was not our main focus.
In Canada, we took the opportunity to move out aggressively to start consultations on the federal government’s commitment to set up the first Canadian Rare Disease Drug Strategy. Because of our patient group leadership with multi-stakeholder engagement, the government is now consulting with the intention of producing a strategy by spring. This may not have happened without COVID, since many other disease groups were either side-tracked or not moving forward with their agendas. Hopefully, the government will also see this development as “good news” in the midst of a pandemic that everyone is struggling with.
Personally, my husband was confined to hospital – because of COVID-19 considerations, he was not moved to a long-term care where risk of disease spread was greater. My son and his wife had their first child and while we could not visit, he worked from home so had lots of time with his newborn.
We are being aggressively proactive in advancing our agenda and taking advantage of opportunities. I think this is true for most rare disease families; one is used to finding resources and creating pathways that are not defined by the system.
Over the past year, so many patient organizations have redesigned how they work to be able to continue to provide support for the families in their community. They did everything from focusing on services through internet, but also telephone where more appropriate. Some have stepped in to advocate for individual access to care and treatment where the COVID-19 pandemic has interrupted the usual access pathway (either supplies or access to HCPs or pharmacies). Some have even provided PPE, meals or financial assistance. It is invaluable to have a rare disease community at a time like this.
We are also advancing on projects, like the Pan-Canadian Drug Strategy and Rare Disease Strategy and internationally on the Global Collaborative Network for Rare Diseases, the Global Commission on the Diagnostic Odyssey, Global Access to Medicines Project, APEC Rare Disease Framework, WHO Universal Health Coverage, and the UN Resolution on Rare Diseases. There are many ways to continue to do the work for the rare disease community, even during the pandemic.
Rare Disease Day 2021 is a celebration and acknowledgement of the capacity of rare disease families and communities. It’s a seminal year for highlighting things that have been in development. We all thought last year, with Rare Disease Day falling on February 29, 2020, that we were at the beginning of major advances. It was also the Lunar Year of the Rat, which is considered the most auspicious, and we had just succeeded in having “rare diseases” included in the UN Declaration on Universal Health Coverage (UNC) the previous fall. It felt like it should be our year.
But COVID-19 came out of nowhere. It has had such a devastating widespread impact – but it is not much different than the experience of many families who unexpectedly learn they are now dealing with a rare disease, for their child or themselves or a senior. It is something that takes over; it now becomes the fulcrum of your daily experience and you have to pivot to accommodate. Luckily, if you did this once with a rare disease, the pandemic is just another bump in the road. So this Rare Disease Day we should celebrate what we can achieve when we do it together – with all of our partners.
I am looking forward to everything advancing, and some things coming to fruition, based on all that we have put in place over last year and this coming year. This will be a demonstration of our capacity as a community and our commitment to helping each other and the rest of the world.
To find out more about Durhane’s advocacy work and how to get involved, visit http://www.raredisorders.ca/.