Steff’s story

Patient Voice ambassador Steff Di Pardo shares her journey of coping with an ankylosing spondylitis diagnosis and how her advocacy provides comfort and support to others with disabilities.

Nick’s story

Patient Voice spoke with Nick Veloce about his twin griefs over the loss of his wife and, due to a horrible accident shortly after, his mobility.

Megan’s story

Patient Voice spoke with Megan Marsiglio about how sharing her experiences with Crohn’s disease has shaped virtually every aspect of her life.

Ed’s story

Patient Voice spoke with Ed Faddies about how he copes with the fear and confusion that can come hand-in-hand with a kidney cancer diagnosis.

Brad’s story

Patient Voice spoke with Brad Arseneau about the traumatic injury that changed his life and how he’s navigated the long road back to being able to enjoy his passion — skateboarding.

Life after transplant: Afsana’s journey with a rare liver disease

At just 16 years old, Afsana Lallani was diagnosed with a rare liver disease. Only a few short years later, she found herself in urgent need of a life-saving organ transplant.

A lesson in advocacy: Linda’s fight for health equality

Linda Roy has spent the majority of her life immunocompromised. Now, from her home in a remote New Brunswick community, she’s turned her experience into a passion for helping others.

Balancing new motherhood and a rare cancer diagnosis

In late 2020, when Paula Hall should’ve been basking in the newness of motherhood, she was instead thrust into intensive treatment for a rare blood cancer.

Tina’s story

Patient Voice spoke with Tina Martel about the realities of cancer and her work to reimagine the constructs of femininity through fashion and art.

Jessica’s story

Patient Voice spoke with Jessica Cohn about the premature birth of her son Ari and the need for increased support and awareness around women’s health.

Peter’s story

Patient Voice spoke to Peter Bovolaneas about his testicular cancer diagnosis, the healing power of laughter, and his passion for erasing stigma around male openness and vulnerability.

Kae’s story

Patient Voice spoke with Kae Tran about learning to accept her muscular dystrophy diagnosis and how she’s working to represent the disabled community online.

Shirley’s story

Patient Voice spoke with advocate Shirley Weir about menopause and the importance of expanding our education to help reshape the conversation into something genuinely helpful.

Emma’s story

Patient Voice spoke with Emma Perry about the difficulties of being diagnosed with type 1 diabetes as a young adult in Canada.

Chantale’s story

Patient Voice spoke with Chantale Thurston about her journey in discovering she had appendix cancer and the need for more compassion in cancer care.

Mike’s story

Patient Voice spoke with Mike Shoreman about how a rare diagnosis deeply impacted his mental health, and why storytelling has played a indispensable role in his ongoing recovery.

Amanda and Kimberly’s story

Patient Voice spoke with Amanda Cecconi about her sister Kimberly’s tuberous sclerosis complex diagnosis, the balance of sisterhood and caregiving, and her family’s advocacy journey.

Unstoppable: Sarah’s journey from coma to altar and beyond

Sarah Kempinska’s rare form of severe ANCA vasculitis saw her in a medically induced coma just days before her wedding. As the one-year anniversary of her marriage approaches, Sarah is thriving, but the struggle of living with the disease remains.

Jamie’s story

Patient Voice spoke with Canadian sports broadcaster Jamie Campbell about his experience with pre-skin cancer and why he’s passionate about increasing conversation around sun safety.

Thriving on and off the ice as a teenager living with a rare condition

Nathan Turgeon, a 16-year-old from rural Quebec, is living with a rare genetic condition called neurofibromatosis type 1. But this ambitious, hockey-loving teenager won’t let anything hold him back from achieving his goals.

Michelle’s story

Patient Voice spoke with Michelle Capon about the immense mental and physical impact that porphyria can have on those who live with the rare condition.

Alice’s story

Patient Voice spoke with Alice Williams about Wilson’s disease, the rare genetic condition that’s turned her family’s lives upside down over the past year.

Harjeet’s story

Patient Voice spoke to Harjeet Kaur to learn about her rare lymphoma journey, and to better understand the importance of representation and diversity in cancer advocacy.

Jeremie’s story

Jeremie Saunders is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Jeremie is one of the hosts of the Sickboy podcast and a dedicated cystic fibrosis advocate who uses his platform to spark conversations about health and access to innovative rare disease medicines.

Mara’s story

Mara Hutchinson is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Mara is a TV reporter, disability advocate, and lifestyle creator who uses her platform to break stigma and spread awareness for those impacted by vision-related rare diseases, like herself.

Why knowledge is power following an NMOSD diagnosis

Lelainia Lloyd reflects on a long and accomplished career as a chronic illness and disability advocate.

The strength of positivity: Sarah and the ‘butterfly’ condition

Sarah Sweeney shares her journey to accepting life with a rare skin disorder defined by fragile skin and constant wounds.

Josie & Cole’s story

Josie Dye is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Josie is a radio host, TV personality, and rare disease mom who harnesses her platform to support other parents through the highs and lows of raising a child with a rare disease.

Angela’s story

Patient Voice spoke with Angela Diano about the numerous barriers that hinder progress when bringing innovative therapies to Canadian rare disease patients.

Reine’s story

Patient Voice spoke with Reine Hodroj about the role that patient organizations can play in helping to combat the isolation of living with a rare inflammatory condition like Behçet’s.

Catherine’s story

Patient Voice spoke with Catherine Mulvale about the pain, and the rare moments of beauty, associated with caring for a parent living with dementia.

Lucas’s story

Patient Voice spoke with Lucas Locke about his family’s experience with Li-Fraumeni syndrome and his choice to not let it affect his life.

Sarah & Benjamin’s story

Patient Voice spoke with oncology mom and rare cancer survivor Sarah DeMelo about the challenges of balancing her son Benjamin’s cancer journey with that of her own.

David’s story

Patient Voice spoke with David Vance about his frustrating journey with hyperacusis, a painful sensitivity to sound that leaves him seeking rare moments of escape.

Kate & Etan’s story

Patient Voice spoke with Kate Vinokurov about her son Etan’s rare disease diagnosis and why it’s important for her to feel in control amidst uncertainty.

Shakhnoza’s story

Patient Voice spoke with Shakhnoza Nasim about her family’s journey with grief following the loss of her first child, Muhubbat, who was born still.

Daniel’s story

Patient Voice spoke with entertainer and writer Daniel Stolfi to find out how important of a role comedy has played in his cancer recovery journey.

Myles’s story

Patient Voice spoke with online creator and HIV advocate Myles Sexton about their journey to reinvent their life after being diagnosed with HIV.

Chord’s story

Patient Voice spoke with Tara and Ben Jaques about their son Chord’s rare diagnosis and how a life-changing medication has finally granted him a sense of peace.

Eli’s story

Patient Voice spoke with Eli about being diagnosed with LADA at 30 years old as well as what inspired him to co-found a platform for fellow diabetes sufferers.

Jason’s story

Patient Voice spoke with cancer advocate Jason Manuge about his mother’s experience with colon cancer and how it’s shaped the way he views his own diagnosis today.

Lorraine’s story

Patient Voice spoke with Lorraine Lowry about being diagnosed with borderline personality disorder (BPD) and ADHD, and how these diagnoses have impacted her parenting.

Allen’s story

Patient Voice spoke with Allen Chankowsky about receiving a terminal cancer diagnosis and how, seven years later, he continues to defy all expectations.

Valeriya & Yaro’s story

Patient Voice spoke with Valeriya Demydenko about sharing her son Yaro’s health journey on social media, and why she maintains a transparent dialogue about the difficult and joyful moments of their life.

In their own words

More stories of "rare" strength, perseverance, and hope from across Canada.

Neil’s story

Patient Voice spoke with Neil Merovitch about the concept of disability, and the influence of ableism in the scientific community as it has manifested in his own life.

Growing in confidence: Thomas’s story

Karine’s son Thomas was diagnosed with growth hormone deficiency at five years old. But now, he’s doing better than ever.

Cheryl’s story

Patient Voice spoke with Cheryl Petruk about how her late husband Eugene’s rare blood cancer journey has inspired a lifetime of advocacy.

Nick’s story

Patient Voice sat down with Nick Ashawasega to talk about the intersection of intergenerational trauma, mental health, and chronic illness in an impactful feature.

Luke’s story

Patient Voice spoke with Leanne and Brian Michalofsky about their lifelong search for answers and a sense of normalcy for their son Luke.

Mercedes and Camila’s story

Patient Voice spoke with Mercedes Palermo about her daughter Camila’s autism diagnosis and their journey with behavioural therapy and advocacy.

Justin’s story

Patient Voice spoke with Justin Loizos about discovering he was living with multiple sclerosis and how that diagnosis has deeply impacted his life and entrepreneurship goals.

Amanda’s story

Patient Voice spoke with Amanda McCallum about learning to manage the incurable pain of Ehlers-Danlos syndrome.

Ben & Katherine’s story

Patient Voice spoke with Ben and Katherine in a 3-part series that explores Ben’s ongoing recovery from a traumatic brain injury and the loving bond that’s kept Katherine by his side.

Heidi’s story

Patient Voice spoke with mental health advocate Heidi Fischer about taking control of her journey and the importance of community.

Angela’s story

Patient Voice spoke with Angela Scalisi to learn about what—and who—motivates her to raise vital funds for brain cancer research in Canada.

Deana & Liam’s story

Patient Voice spoke with Deana Wilson about her son Liam’s cystic fibrosis journey and how he has become self-empowered in making his voice heard.

Jared’s story

Patient Voice spoke with Jared Wayland from St. Catharines, ON about his SMA type III diagnosis and how it has impacted his life and fatherhood.

Athina’s story

Patient Voice spoke with Athina Hall to understand craniocervical instability and what needs to be done for chronic illness patients in Canada.

Anaya’s story

Patient Voice spoke with Chanika Fernando and her husband Dean about their daughter Anaya, and what it’s like to be parents to a child who’s an N of 1.

Renee’s story

Patient Voice spoke with Renee Abrenica about the important role that her gym community played throughout her metastatic melanoma journey.

Leah’s story

Patient Voice spoke with Leah Haynes about eliminating stigma around menstrual pain and her creation of a positive space for endometriosis advocacy.

Tami’s story

Patient Voice spoke with Tami Ellis about the layered impact of endometriosis and the power in advocating for a diagnosis.

Emily’s story

Patient Voice spoke with Emily Pinckard about CTEPH, a rare and potentially fatal lung disease, and how it’s changed the course of her life.

Erin’s story

Patient Voice spoke with author Erin Paterson about confronting her Huntington’s disease diagnosis and what it might mean for the future.

Ally’s story

Patient Voice spoke with Ally Ladak about raising awareness of what matters to him and getting involved in the community.

Pamela’s story

Patient Voice spoke with Pamela Fortier from Montreal, QC, about finding out she had Cowden syndrome and what it’s meant for her life ever since.

Christine’s story

Patient Voice spoke with Christine de la Cruz, a schoolteacher born with Crouzon syndrome from Toronto, ON, who uses her experience to teach students about diversity and inclusion.

Michelle’s story

Patient Voice spoke with Michelle Friesen, a breast cancer survivor from Calgary, AB. She speaks about the importance of screening younger patients, survivorship, support, and reconciling with her body post-cancer.

Alyssa’s story

Patient Voice spoke with Alyssa Dickey, a Toronto, ON-based stay-at-home mom and multiple myeloma advocate about the uncertainty that goes hand-in-hand with a blood cancer diagnosis.

Francine & Joseph’s story

Patient Voice spoke to Francine Saliba about Sanfilippo syndrome, a rare neurodegenerative condition that affects her young son, Joseph.

Building a good life in a body slowly turning to bone

Kathleen reflects on challenges and triumphs from her FOP journey.

Unravelling a family’s ties to Fabry disease

Fatoumata’s quest to identify the rare condition affecting her family.

Teaming up to take on ALS

Mark explores his evolution from professional athlete to advocate.

Going to bat against a rare metabolic disorder

Andrew shares how LCHAD continues to impact nearly every aspect of his life.

Balancing young adulthood with a fatiguing rare disease

Olivia opens up about her 12-year battle with paroxysmal nocturnal hemoglobinuria (PNH).

Coming of age with XLH

Alice explores the unique challenges that come with balancing a busy life and transitioning to adult care.

A reminder to always look for the zebra amongst the horses

Kim shares how she ultimately arrived at an HAE diagnosis.

Finding strength and stability in light of a dark diagnosis

Sumaiya and Ibrahim share their journey with Duchenne muscular dystrophy.

It’s not all in your head

Morning show host Sandra Plagakis and her frustrating odyssey to being diagnosed with myasthenia gravis.

On seeking joy following a rare cancer diagnosis

Jules shares why she chooses to confront CCA with hope and optimism.

An all-too-common concern for Canada’s “rare” community

An anonymous patient discusses the stigma of living with a rare, inherited disorder like HoFH.

Munira’s story

When I was a child in Tanzania, I could see Mount Kilimanjaro from my window, mighty and immovable. Permanent. When you’re young, so much of life feels like that mountain. It’s unlimited and it’s not going anywhere. But we aren’t mountains.

Isabelle’s story

Patient Voice spoke with Michal and Jackie Borkowski about the loss of their daughter, Isabelle or ‘Isa’, to a rare, deadly and especially cruel form of brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG).

Kathleen’s story

Patient Voice sat down with Kathleen Prendiville to reflect on the life and legacy of her late sister, Sarah, who lost her life to suicide in February of 2022.

Chris & Bert’s story

Bert and I had only been together for about a month when we decided to go on a canoe trip in Algonquin Park.

Melanie’s story

Patient Voice spoke with musician Melanie Goldman about borderline personality disorder and how it’s shaping her future.

Ian’s story

Politics has always been a passion of mine. I studied political and social sciences at university and I’m acutely aware of the flaws in how our local governments are run.

Deccan’s story

The kids on Deccan’s hockey team are all so focused on the future. They’re on the ice five or six times a week, and their parents are all so optimistic and full of dreams.

Sonia’s story

In 2011, I went from feeling fine on Friday to being on death’s door by Monday. I was admitted to the hospital with my eyes swollen shut and blisters covering 95% of my body.

Dr. Shear’s story

I’ve found, in medicine, that the routes people take to find their careers aren’t always planned. Often what happens is, along the way, there’s some role model, some person who’s doing something good and interesting, and it makes you think: ‘That’s so cool, I could do that. It's not what I was planning, but I want to try it.’

Mateo’s story

In April, it was snowing and snowing and snowing. As Canadians, we know it’s probably going to snow in April, but when it does, we’re still like: ‘Are you kidding me? Seriously?’

Dr. Alam’s story

I initially wanted to be a surgeon because a cardiac surgeon saved my father’s life. I started medical school expecting to go that route. But then I fell in love with family medicine.

Jordyn’s story

It was a joke when I was a kid that my second home was the hospital. My hands would swell up to the size of a baseball.

Esther’s story

Patient Voice spoke with Esther MacLeod about pulmonary hypertension, the condition that has robbed her of the ability to do many of the things that she once cherished.

Marta’s story

I started having migraines when I was five years old, growing up in Poland. I remember missing school, lying at home in bed with the lights off.

Bryce’s story

I remember being at the doctor with my mom as a teenager and him asking if I was active in sports. My mom laughed. ‘Is guitar a sport?

Latoya’s story

Inessa’s story

I never thought that I’d get cancer. I’ve been a vegetarian for 25 years, took yoga classes and ran half marathons. I've backpacked around the world, climbed Kilimanjaro, and lived in four countries. I was healthy and had a full life.

Beth & Madi’s story

Patient Voice spoke with Beth Vandstone about her daughter Madi’s cystic fibrosis (CF) journey and why the fight never stops for the CF community.