Meet the 2026 Scholars

Abbie is entering her fourth and final year of a Biological Sciences degree, where she has developed a strong interest in human health, disease, and the connection between scientific research and patient care. She is particularly fascinated by complex and rare diseases, including how they develop, how they affect the body, and why they can be so difficult to diagnose and treat.

Her interest in science has been shaped not only by her studies, but also by her experiences as a patient and advocate with the GI Society. These experiences have shown Abbie that science does not exist in isolation from the people it is meant to serve. Behind every diagnosis is a person navigating uncertainty, treatment decisions, and a healthcare system that does not always have clear answers.

Living with complex health challenges has fundamentally changed the way Abbie approaches her education and the future she hopes to build. She has experienced the vulnerability of being a patient, as well as the frustration that can come when symptoms are misunderstood or answers are difficult to find. While there have been periods when her health made academics more challenging, Abbie has continued to adapt and move forward.

Rather than allowing illness to define the limits of her education, Abbie has allowed her experiences to shape its direction. They have strengthened her interest in science, medicine, and patient advocacy, while encouraging her to look beyond simply understanding disease mechanisms and consider how scientific knowledge can translate into better care.

For Abbie, receiving the RAREvolution Scholarship represents much more than financial support. It is recognition of the experiences, challenges, and growth that have shaped her journey with rare disease. It also reminds her that her experiences as a patient and advocate are valuable and that her voice has a place within the rare disease community.

“I am especially honoured to become part of the RAREvolution Scholars community because it connects me with others who are transforming their experiences into advocacy, education, research, and meaningful change.”

The scholarship will also allow Abbie to continue pursuing her education with greater confidence and less financial pressure as she works toward her future goals.

Abbie hopes to pursue a career in medicine, becoming a physician who combines scientific curiosity with compassionate, patient-centred care. She is particularly interested in working with patients whose conditions are complex, uncommon, or poorly understood. Alongside clinical care, she hopes to remain involved in research and advocacy, contributing to a better understanding of complex diseases while advocating for earlier recognition, improved access to care, and greater patient involvement in healthcare decisions.

Ultimately, Abbie wants to turn her experiences into something meaningful for others. She knows what it feels like to search for answers, to have questions that do not have simple explanations, and to want someone in the healthcare system to truly listen.

“I want to be that person for someone else.”

Andreas is in the final stages of completing his PhD in Medical Science at the University of Calgary. As a developmental biologist, his research explores the fundamental biological processes underlying rare diseases, including how cells behave and how tissues develop to build an embryo.

Through his years of research, Andreas has come to recognize that rare diseases cannot always be understood through isolated diagnoses or categories. The experiences and outcomes of people living with the same condition can vary significantly, highlighting the need for healthcare and research approaches that recognize each patient as an individual.

This has led Andreas to become deeply interested in precision medicine and learning health systems. He is passionate about understanding why diseases can progress differently from one person to another and how research, technology, and lived experience can come together to create more individualized approaches to care.

Andreas' interest in rare disease research is also deeply personal. His diagnostic journey began when he was 14, and for several years, uncertainty was a defining part of his experience. It took two years to identify his condition, and even after receiving a diagnosis, his health did not always follow what was expected based on existing knowledge.

As he entered university, Andreas made a deliberate choice to view these experiences as a source of strength rather than a limitation. His experience as a patient has become an important part of how he approaches his work as a researcher.

For Andreas, being both a patient and a researcher gives him a unique perspective on the future of healthcare.

“As the field of medicine moves to more personal, individualized care for each patient, bringing together the perspectives of lived experience with new technologies is critical to the path forward.”

Receiving the RAREvolution Scholarship is meaningful to Andreas as he prepares for the next stage of his career. The financial support provides a strong foundation as he approaches graduation, but the recognition itself is equally important. To Andreas, the scholarship acknowledges the strengths that come from his dual identity as a rare disease patient and researcher and the potential that exists when those two worlds come together.

Looking ahead, Andreas wants to help build stronger connections between research and healthcare. He hopes to make it easier for discoveries made by researchers across Canada to translate into meaningful improvements in the lives of people living with rare and chronic conditions.

Ultimately, Andreas wants to help change the way patients and families experience the healthcare system. He envisions a future where patients feel understood as individuals and confident that their care reflects the best available evidence, research, and understanding of their unique circumstances.

His goal is to help ensure that scientific breakthroughs do more than advance knowledge. They reach the people who need them and help create better futures for patients and families.

Daniel is pursuing a Master’s of History at Lakehead University, where his passion for history, particularly European history, continues to shape his academic journey. Looking ahead, Daniel hopes to use his education to become a high school or post-secondary history teacher and share his enthusiasm for the subject with future generations.

Daniel’s educational journey has also been shaped by his experience living with a rare cancer. In 2021, the severity of his chemotherapy forced him to defer his studies. It took a full year before he was able to return to work and school. When he came back, he faced new challenges, including managing the side effects of chemotherapy and frequent follow-up appointments while keeping up with his classes.

“Losing that year felt like my life had been put on pause,” Daniel reflects.

Returning to school gave Daniel a renewed perspective on his education and his future. Rather than deterring him from his goals, his experience strengthened his determination to pursue the path he wanted. He returned with a greater sense of focus and a desire to make the most of his opportunities.

His experience with cancer has also broadened his interests beyond the classroom. Daniel has become increasingly involved in the cancer community and has developed a deeper appreciation for cancer research and the organizations working to improve quality of life for patients. In particular, he hopes to contribute to initiatives supporting adolescents and young adults affected by cancer.

For Daniel, receiving the RAREvolution Scholarship represents more than financial support. It is an acknowledgement of the challenges he has experienced and an opportunity to be part of a community where people can find understanding and connection.

“After going through the hardships I have been through, it is such a relief to be acknowledged and honoured through this scholarship.”

The scholarship will also help ease the financial pressures of pursuing his master’s degree, allowing Daniel to spend less time working multiple jobs and more time focusing on his education and maintaining a healthier balance between school and life.

As Daniel works toward completing his master’s degree, he hopes to begin his career as a high school history teacher while continuing his involvement with cancer organizations and hospitals. For him, supporting patients, particularly adolescents and young adults, is a passion that has become an important part of his journey and one he hopes to carry into the future.

Josh is currently pursuing his Doctor of Medicine at the University of Ottawa, continuing an academic journey rooted in his passion for life sciences and translating scientific discoveries into meaningful improvements in people’s lives.

Before entering medical school, Josh completed an undergraduate degree in Translational and Molecular Medicine and a Master’s in Cellular and Molecular Medicine at the University of Ottawa. His research focused on rare disease, giving him the opportunity to see how scientific discoveries can move from the laboratory toward clinical applications. One of the most rewarding parts of his research experience was watching therapies developed in the lab progress into clinical trials.

Josh’s interest in medicine and research is also deeply connected to his lived experience with a rare neuromuscular disorder. Growing up, he attended numerous medical appointments, where one of the things that stayed with him most was the kindness and empathy of the healthcare professionals who cared for him.

In particular, Josh remembers his childhood rehabilitation specialist as someone who was consistently caring, compassionate, and willing to listen. She was also a strong advocate for him, showing Josh the difference that a healthcare professional can make when they support not only a patient’s medical needs, but the person behind them.

That experience has shaped the physician Josh hopes to become.

“Ultimately, I want to continue down the same path: blend science with patient advocacy to become a physician that can help their community through working one-on-one with patients and making systemic changes through scientific advances.”

Receiving the RAREvolution Scholarship is especially meaningful to Josh because his experience with rare disease has presented significant challenges while also inspiring his interest in science and advocacy. The scholarship will support him as he takes the next steps toward his goal of becoming a physician and continuing to contribute to the rare disease community.

Josh also hopes his role as a RAREvolution Scholar will allow him to work with the Canadian Rare Disease Network to create more opportunities for learners living with disabilities and rare diseases. He believes that people navigating these experiences deserve greater support and opportunities to pursue their educational goals.

Looking ahead, Josh hopes to become a physician who combines a strong understanding of medical science with steadfast patient advocacy. He is particularly interested in caring for people living with rare conditions and using his own lived experience to better understand and support his patients.

He also hopes to contribute to systemic change through research and scientific advances, carrying forward the translational approach that has shaped his education.

Outside of medicine and research, Josh enjoys playing piano, gaming, and biking on his recumbent trike. And while his professional ambitions are focused on improving healthcare for others, he also has a personal goal on his bucket list: exploring the world and experiencing different cultures, with Japan at the top of the list.

For Josh, the future of rare disease care lies in bringing together the best of both worlds: scientific discovery and human connection.

Kate is studying Forensic Science at Trent University, with a particular interest in the criminal law enforcement sector. She is passionate about using science, critical thinking, and problem-solving to help solve crimes and contribute to the pursuit of justice.

Her interest in forensic science is closely connected to skills she has developed through her own experience living with a rare disease. Navigating life with a rare condition has taught Kate to be observant, attentive to detail, and comfortable paying close attention to things that others might overlook.

For Kate, those skills have become an unexpected strength and have helped shape her educational and career interests. The ability to remain focused, notice details, and work through complex situations are all qualities she sees as important in the high-pressure environment of forensic science.

Receiving the RAREvolution Scholarship is meaningful to Kate not only because of the financial support it provides, but because it gives her the opportunity to find something positive within an experience that has presented its own challenges.

“It just means a lot to have something positive come out of having a rare disease.”

Finding summer employment can be difficult while managing her rare disease, making the scholarship particularly valuable as she works toward completing her education. The financial support will help cover her school fees and reduce some of the pressures that can come with pursuing a university degree.

For Kate, becoming part of the RAREvolution Scholars community is equally meaningful. Living with a rare disease can sometimes feel isolating, and connecting with other students who understand the experience gives her an opportunity to find community and shared understanding.

Looking ahead, Kate sees many possible paths for her forensic science education. She could pursue a career as a forensic scientist or work in a forensic identification unit in policing. She is also considering further education in medicine or law, with possibilities ranging from becoming a doctor or coroner to pursuing a career in the legal field.

Whatever direction she ultimately chooses, Kate hopes to use the skills and knowledge she develops through her education to help solve crimes and contribute to bringing justice to people who have been harmed.

Her journey demonstrates how experiences that can initially feel like obstacles can also help develop unexpected strengths. For Kate, the attention to detail and perseverance she has gained through living with a rare disease are now helping shape the future she wants to build.

Kelly-Anne is currently studying Social Sciences in college in Quebec, with plans to continue her education at university in International Relations. She is interested in building a career focused on relationships between countries, particularly international trade, importation, and exportation.

Receiving the RAREvolution Scholarship will provide important support as Kelly-Anne continues her education. The financial assistance will help with the costs of accessible equipment, which can be expensive, while allowing her to focus on her studies and future goals.

For Kelly-Anne, the scholarship represents an opportunity to continue pursuing her education while navigating the additional costs that can come with accessibility needs. With this support, she can move forward with greater confidence as she works toward her university studies and long-term career aspirations.

Looking ahead, Kelly-Anne hopes to pursue International Relations and eventually work in international trade, helping facilitate relationships and exchanges between different countries. She is particularly interested in importation and exportation and hopes to build a career that allows her to contribute to connections between countries on a global scale.

Leah is entering her first year of the Life Sciences program at the University of Toronto, with plans to specialize in Physiology after her first year. She hopes to become involved in research during her undergraduate studies and is already beginning to explore the areas of medicine and science that she hopes to pursue in the future.

Before her health challenges changed her path, Leah was passionate about competitive swimming and cross-country running. When her medical conditions made it impossible to continue these activities, she found new ways to stay connected to the sports she loved. She began coaching and teaching swimming, an experience that has allowed her to support other young athletes, including swimmers living with rare diseases.

For Leah, becoming a mentor to these swimmers has been especially meaningful. Her own experiences have given her a deeper understanding of the challenges they may face, and she has found great purpose in helping others navigate their own journeys.

Leah is also passionate about volunteering. Over the past two years, she has volunteered in a variety of roles at her local hospital, gaining insight into healthcare and the experiences of patients and families. Through her involvement with Challenger Baseball, she has also had the opportunity to learn more about rare conditions and different abilities.

Her own experience with rare disease has profoundly shaped the way Leah thinks about healthcare and her future. Finding the right doctor and receiving answers took considerable time and research, particularly because her condition is not always visible. Along the way, she experienced both the challenges of feeling unheard and the profound difference that a compassionate healthcare provider can make.

“I have seen doctors who have suggested that my symptoms are purely psychological and shown disregard for the pain that I face each day. Then there were the doctors who were able to listen, show compassion, and give me hope.”

These experiences have helped Leah define the kind of physician she hopes to become. She wants to look beyond individual symptoms and understand patients as whole people, recognizing the connections between different aspects of their health and experiences.

Living with multiple medical conditions has also sparked Leah’s interest in questions that remain under-researched. In the future, she hopes to explore connections between connective tissue disorders and vascular compression syndromes, with the goal of contributing to research that could help other patients who are navigating multiple diagnoses and unanswered questions.

For Leah, receiving the RAREvolution Scholarship is a meaningful way to make something positive out of a difficult journey. She hopes that sharing her story will help others who are experiencing similar challenges feel less alone, particularly those trying to navigate an uncertain healthcare system.

The scholarship will also support Leah as she works toward ambitious educational goals, giving her greater financial flexibility to focus on her studies. Just as importantly, joining the RAREvolution Scholars community gives her an opportunity to connect with other students who have faced medical challenges and to build relationships within the Canadian rare disease community.

Looking ahead, Leah hopes to pursue medicine and medical research. Although she has not yet decided what type of physician she would like to become, one thing is clear: she wants to help others, particularly patients with rare diseases and connective tissue disorders who may be struggling to find answers.

Ultimately, Leah hopes to make the healthcare journey easier for patients who come after her. She wants to contribute to research, improve understanding of complex conditions, and help patients feel heard and supported.

“I know how much it would have meant when everything was uncertain to hear about someone just like me.”

For Leah, that hope has become part of her purpose: to become the person she once needed, and to help others find answers, compassion, and hope along the way.

Mabel is pursuing a Master of Social Work, building on her background in psychology and community health. She is passionate about disability advocacy, health equity, and accessibility, and is particularly interested in how healthcare and community systems can be designed to better serve the people who rely on them.

Having experienced healthcare both as a patient and through her work in community health, Mabel brings a unique perspective to her studies. Her experiences have led her to ask important questions about how systems can become more accessible, equitable, and responsive to the people navigating them.

Living with a rare disease has made Mabel’s educational journey less predictable. She has had to balance her studies with pain crises, hospital visits, medical appointments, and days when her body has required her to slow down. Through these experiences, she has learned to adapt and keep moving forward, even when the path does not unfold as expected.

Her experiences have also shaped what she believes people need when navigating healthcare. Mabel understands how meaningful it can be to have someone listen, believe you, and help you navigate a system that can feel overwhelming. That understanding helped lead her from psychology and community health into social work, where she hopes to continue advocating for people facing barriers within healthcare and other systems.

For Mabel, becoming a RAREvolution Scholar is an opportunity to be part of a community that understands the rare disease experience and celebrates what people living with rare diseases can accomplish.

“My disease has been a part of my life for as long as I can remember, so there is something special about being recognized by a community that understands the rare disease experience.”

One of Mabel’s proudest accomplishments has been planning, organizing, and hosting two community art events benefiting the sickle cell community. With sponsorship from SCAGO and a $5,000 guarantee to bring her vision to life, Mabel created spaces where members of the community could come together through art, connection, and celebration.

The experience reinforced an important lesson for Mabel: supporting people is not always about fixing a problem.

“Sometimes it is about creating space for people to experience joy, community, and belonging.”

Looking ahead, Mabel hopes to work in community health and disability advocacy, eventually moving into policy and leadership. She wants to use her education and lived experience to help create meaningful change for people who face barriers within healthcare and society.

Whether through advocacy, policy, community programming, or simply creating spaces where people feel seen and connected, Mabel hopes to make things better for the people coming after her.

Mark will begin his Bachelor of Education in Fall 2026, building on his background in psychology and sociology and his longstanding passion for advocacy and helping others. His experiences working at the CNIB, writing a book about technology for people who are blind or visually impaired, and volunteering at a crisis counselling centre have all helped shape his goal of becoming a teacher and, eventually, a school counsellor.

For Mark, education is not simply a career path. It is an opportunity to use his experiences to help make schools more accessible, supportive, and inclusive for students who may be facing challenges others do not understand.

Living with a rare disease and gradually losing his vision while going through school has significantly influenced Mark’s educational journey. He has had to find different ways to approach reading, studying, and completing assignments, often requiring additional time and energy. At times, the demands of school have been physically and mentally exhausting.

These experiences have also given Mark a deep understanding of the importance of accessibility and advocacy. He knows what it feels like to navigate education while trying to find the right resources and support, particularly at a time when fewer resources were available to students with disabilities.

“I know what it is like to feel like you have to figure things out as you go,” Mark says.

Rather than allowing these challenges to limit his goals, Mark has used them to shape the kind of educator he hopes to become. He wants to help students who are struggling with disabilities feel supported, while also empowering them to advocate for themselves.

Receiving the RAREvolution Scholarship is especially meaningful to Mark because it represents recognition of the advocacy work he has done throughout his journey. He sees being selected as an acknowledgement of the effort he has put into supporting and advocating for others.

The scholarship will also provide important financial support as Mark begins his degree. Because of his rare disease, balancing university and employment at the same time is not feasible. With the demands of an Education degree, including coursework and practicums, the scholarship will allow him to focus his energy on his studies without the added pressure of working alongside school.

Looking ahead, Mark hopes to spend the first part of his career as a teacher before working toward becoming a school counsellor. He hopes to be a trusted person students can turn to when they are struggling, whether because of a disability or another challenge in their lives.

Mark believes his own experiences can offer a perspective that helps him understand students in a different way. Ultimately, he wants every student to know that having a disability does not mean they cannot accomplish the things they want to accomplish.

Through his education, advocacy, and lived experience, Mark hopes to help create schools where students feel understood, supported, and empowered to reach their goals.

Momina is completing an online Bachelor of Health Sciences degree through Queen’s University, where she is building on her passion for disability studies, cultural competency, and evidence-based medicine. Her interests lie at the intersection of healthcare, research, and lived experience, with a particular focus on how patients with disabilities can meaningfully shape clinical practice and research.

Alongside her studies, Momina conducts research at the University of Calgary, exploring how people with lived experience can help inform healthcare and research. She believes healthcare must look beyond treating clinical symptoms and consider the broader, systemic challenges that patients with disabilities navigate in their everyday lives.

Momina’s perspective is deeply informed by her own experience living with a rare disease. Diagnosed with Granulomatosis with Polyangiitis at the age of nine, she has spent much of her life navigating complex healthcare needs. After years of treatment, her health remains fragile, and a severe flare-up in 2024 led her to transition from traditional in-person education to an online degree program.

Adapting her education around her health has not always been easy, but the experience has also strengthened Momina’s determination to make a difference within healthcare. Navigating the healthcare system as a patient, and more recently as a caregiver for her mother, has given her firsthand insight into the gaps that can exist in chronic illness care.

“My rare disease may have taken away a normal childhood, but it also gave me a fierce ambition to enter the medical field and advocate for those who fall through the cracks of the system.”

For Momina, receiving the RAREvolution Scholarship provides both practical support and a powerful sense of recognition. Financially, the scholarship will help cover her tuition without requiring additional government loans, allowing her to direct more of her resources toward essential household expenses and the specialized dietary needs associated with managing her condition.

Just as importantly, becoming a RAREvolution Scholar gives Momina a sense of connection to a community that understands the unique challenges of living with a rare disease while pursuing an education.

“Living with a rare disease can feel very isolating, and knowing that there’s a network of peers and mentors who truly understand the unique struggle of managing health and academics is incredibly empowering.”

Looking ahead, Momina is preparing to begin an internship with the Accessibility for Ontarians with Disabilities Act (AODA) Division, where she hopes to deepen her understanding of systemic advocacy and policy. She is also preparing to write the MCAT in 2027 as she works toward her ultimate goal of becoming a physician.

Momina hopes to combine compassionate clinical care with her experience as a patient, researcher, and advocate. She wants to provide the kind of care that made a difference in her own childhood while helping bridge the gap between clinical practice and the everyday realities of people living with rare and chronic conditions.

Her goal is not simply to work within the healthcare system, but to help improve it for the people who depend on it.

This fall, Natasha will begin her first year of medical school at Toronto Metropolitan University, building on her previous studies in Translational and Molecular Medicine at the University of Ottawa. Her passion lies at the intersection of medicine, research, advocacy, and lived experience, with a particular focus on improving healthcare for young people living with rare and rheumatic diseases.

Natasha believes patients should be more than participants in healthcare conversations. Their lived experiences are a valuable form of expertise that should meaningfully inform research, clinical care, and healthcare decision-making.

That belief has been central to her work as a patient advocate. In 2021, Natasha founded Take a Pain Check Foundation, a youth-led nonprofit supporting young people living with rheumatic diseases. Through the organization, she has helped create opportunities for education, peer connection, leadership, research engagement, and advocacy, empowering young people to have a greater voice in the healthcare systems that affect their lives.

Natasha’s commitment to this work is deeply rooted in her own experience. Diagnosed with polyarticular juvenile idiopathic arthritis at 13, she experienced firsthand what it means to navigate a chronic illness while growing up and pursuing an education. Managing treatment, medical appointments, school, and the physical demands of everyday life has not always been easy, but these experiences have shaped her understanding of resilience, accessibility, and the importance of being heard as a patient.

Her lived experience ultimately inspired her involvement in patient-oriented research and helped shape her decision to pursue medicine. Natasha hopes to bring together scientific knowledge, clinical care, research, and lived experience to help create a healthcare system where young people with rare diseases feel supported, understood, and meaningfully involved in decisions about their health.

For Natasha, receiving the RAREvolution Scholarship is both an honour and a meaningful source of support as she begins medical school. The scholarship will help reduce the financial pressures of pursuing her education, allowing her to focus more fully on her studies while continuing her advocacy and involvement in the rare disease community.

It also represents something deeply personal: recognition that lived experience can become a source of leadership and positive change.

“Being selected as part of the inaugural RAREvolution Scholar cohort reminds me that the challenges I have experienced can help shape a more compassionate and inclusive healthcare system.”

Looking ahead, Natasha hopes to become a physician who combines compassionate clinical care with research, advocacy, and health-system change. She wants to contribute to improving the diagnosis, treatment, and long-term experiences of people living with rare and rheumatic diseases, while ensuring that healthcare is accessible and responsive to each patient’s circumstances.

She also hopes to continue growing Take a Pain Check Foundation and creating opportunities for young people with rheumatic diseases to connect, develop leadership skills, participate in research, and advocate for change.

Ultimately, Natasha hopes to help build a healthcare system where patients, particularly young people and those living with rare conditions, are not simply recipients of care, but genuine partners in shaping it.

R.S. is studying public health with a focus on understanding how social determinants of health shape the health and well-being of populations. Through their studies, they hope to better understand how healthcare systems work, where inequities and disparities emerge, and how evidence-based approaches can help create healthier and more equitable communities.

Their interest in public health is deeply connected to their own experiences navigating health challenges within Canada’s healthcare system. Living with a condition that is not always well understood has given R.S. a personal understanding of the uncertainty that can accompany complex health conditions and the challenges of finding appropriate care and support.

Throughout their academic journey, R.S. has persevered through symptoms related to their disease. In recent years, they experienced an intracerebral brain hemorrhage caused by a cavernous malformation. Managing the uncertainties associated with their health while continuing their education has been challenging, but these experiences have also helped shape their goals.

Rather than simply focusing on their own healthcare experiences, R.S. has been inspired to look more broadly at the systems and circumstances that influence health. Their decision to pursue public health reflects a desire to understand how healthcare can be improved and how barriers to health and well-being can be reduced for individuals and populations.

For R.S., receiving the RAREvolution Scholarship is meaningful because it recognizes the potential, growth, and strengths of people living with rare diseases.

“To me, the RAREvolution Scholarship recognizes the potential and growth of individuals living with rare diseases in education and draws attention to our personal strengths.”

The scholarship will provide important support as R.S. continues their studies while also navigating their ongoing recovery. It will help ease some of the challenges of balancing their health with the demands of their public health program and allow them to continue working toward their educational and career goals.

Looking ahead, R.S. hopes to pursue a career focused on improving health outcomes through evidence-based public health measures. They want to use the knowledge and skills gained through their studies to help individuals and populations overcome barriers, reduce disparities, and strengthen preventive approaches.

Ultimately, R.S. hopes their education will contribute to creating healthier and more secure environments for Canadians and others experiencing health challenges. Their journey has shown them the importance of understanding not only individual health experiences, but also the systems and conditions that shape them.

Rosie is beginning her journey toward becoming a dietitian, starting with an Associate of Science program before transferring to either the University of British Columbia or the University of Alberta to complete her dietetics education. She hopes to eventually work with patients and families living with rare disorders, with a particular interest in specializing in pediatrics.

Her passion for helping children and families is deeply connected to her own experience living with phenylketonuria (PKU), a rare inherited metabolic disorder. Managing PKU requires ongoing attention to her medical diet, medications, and blood tests, creating an additional layer of responsibility in her everyday life.

Her rare disorder has also influenced her educational journey. Rosie experiences challenges with executive functioning, including task initiation, maintaining focus, and time management, which can make school more difficult at times. Rather than allowing these challenges to define her education, she has been working to develop strategies to manage them and continue moving toward her goals.

At the same time, Rosie believes that living with PKU has brought meaningful opportunities into her life. Through the rare disease community, she has found supportive relationships and opportunities to help others. She has also had the chance to participate in public speaking and presentations at CanPKU+ events, experiences that she describes as both rewarding and meaningful.

These experiences have helped Rosie see her rare disorder not only as something she has had to manage, but also as something that has connected her with communities and helped shape the person she wants to become.

For Rosie, receiving the RAREvolution Scholarship is deeply meaningful because it helps make her educational goals more attainable.

“It's scholarships like this that allow me to reach goals that would otherwise not be possible for me. Truly, it makes all the difference.”

She is also grateful to be recognized by a community that understands the rare disease experience. For Rosie, supportive communities like RARE help transform what can sometimes be a difficult journey into one that also includes connection, encouragement, and pride.

Looking ahead, Rosie’s greatest goal is to help other children and families living with PKU and other rare disorders. She hopes that becoming a dietitian will give her the knowledge and skills to provide practical support while helping families navigate the complex realities of managing a rare condition.

Ultimately, Rosie wants to use both her professional knowledge and lived experience to become a role model for other young people living with rare disorders. Her journey has taught her that a rare disorder can bring challenges, but it can also create opportunities to connect with others, find community, and use your experiences to make a difference in someone else’s life.

Siwaye is studying Sociology at the University of Calgary with plans to eventually pursue medicine. Her interests span research, healthcare, and community work, with a particular passion for understanding people’s experiences within healthcare systems.

She is especially interested in research that creates opportunities to hear directly from patients and families and understand their experiences. She also loves working with children and families and has become increasingly involved in the congenital heart disease community, an area she hopes to continue supporting throughout her career.

Siwaye’s connection to congenital heart disease is deeply personal. She was born with Tetralogy of Fallot and underwent open-heart surgery at just three years old. As a child, she did not think of herself as a “rare disease patient.” She was simply a kid who occasionally had to visit her cardiologist.

As she has grown older, however, Siwaye has become more curious about her own medical history and what her condition and treatment meant for both her and her family. Asking her parents questions and learning more about their experiences has given her a deeper understanding of the many dimensions of healthcare beyond treating a medical condition.

That perspective has helped shape her interest in sociology, research, and patient and family experiences, while also strengthening her desire to pursue medicine.

For Siwaye, receiving the RAREvolution Scholarship provides both meaningful financial support and an opportunity to connect with a community she has rarely experienced before.

“$5,000 toward school is a huge help. Tuition is definitely something I think about a lot, so finding out I got the scholarship was genuinely such a relief.”

As a member of the inaugural RAREvolution Scholar cohort, Siwaye is also excited about meeting other students living with rare diseases. Although their conditions and experiences may be very different, she hopes to find connection through the shared understanding that comes from navigating life with a rare condition.

Looking ahead, Siwaye’s immediate goal is medical school and becoming a physician. While she has not yet chosen a specialty or mapped out exactly what her career will look like, she knows she wants research and community involvement to remain part of her work.

Her involvement in the congenital heart disease community has become particularly meaningful. She has experienced a unique shift from being the child living with a heart condition to becoming someone who can support and advocate for younger children and families going through similar experiences.

“It’s been cool going from being the kid with the heart condition to now being old enough to actually support and advocate for younger kids and families going through some of the same things.”

For Siwaye, that transition represents more than a change in perspective. It is a glimpse of the kind of healthcare professional she hopes to become: someone who understands that good healthcare is not only about treating a condition, but also about listening to the people and families living with it.