inspiring canadians to live better.

healthing leaf

inspiring canadians to live better.

healthing leaf
home / rare diseases

rare diseases

collectively, rare diseases affect millions, yet patients often face a "diagnostic odyssey." this hub aggregates resources on genetic testing, orphan drugs, and accessing specialized care in canada. it serves as a platform for advocacy, connecting isolated families with the broader community of those managing ultra-rare conditions.

articles
rare diseases
jori fales with daughter charleigh pollock, 9 in this photo, who has a rare neurodegenerative condition known as batten disease.
opinion: a better future for 1 in 12 canadians starts with rare disease reform
kris kiner epp sun disease
out of the shadows: new epp sun disease drug trial gives people hope for a brighter future
from left to right: chiquita hessels, sarah hunt, katie hulan, anne marie carr. collage of photos of 4 women.
rare disease day 2026: finding purpose and community despite the odds
christine macfadyen. young woman posing for a selfie.
they may have rare diseases, but they're 'not rare people'
rare heart surgery uhn's peter munk cardiac centre
rare heart surgery gives teenage girl her life and future back
african male pediatrician hold stethoscope exam child boy patient visit doctor with mother, black paediatrician check heart lungs of kid do pediatric checkup in hospital children medical care concept
sickle cell disease in canada: stats, impact and resources
mcfarlane family ird
caring for kids with rare genetic eye disease is about staying strong for them
 
dwijnieanddaughternavigatingthesystemsicklecelldisease
caring for sickle cell disease: building community and adapting to uncertainty
caring caucasian mother talk comfort unhappy sad teenage daughter suffering from school bullying or psychological problems, loving mom support make peace with depressed introvert teen girl child
what is periventricular nodular heterotopia (pvnh)? symptoms, causes and treatments
full length photo of a caucasian adult college student feeding a friend with cerebral palsy on campus
als in canada: stats, impact and resources 
silvia petrozza wifl scleroderma
living with scleroderma: appreciating the ‘moments in between’ to find strength
family picture of kirton family. five people all wearing toronto maple leafs jerseys
former nhler mark kirton living and leading with als: 'be loud about it'
fnd word. concept of functional neurological disorder with a human brain on white background
functional neurological disorder: what to know about causes, symptoms and treatments
darryl bedford, cidp
what it feels like: 'you don’t know what your future holds' living with cidp
sakina, yasin, and family - friedriech's ataxia
living with friedreich’s ataxia: the loneliness of losing control
advertisement
 
madi vanstone, left, lives with cystic fibrosis, while stephen parrot, second from left, has two daughters, pictured, that live with von hippel-lindau syndrome.
rare disease day 2025: slow movement on billion-dollar pledge for rare disease drugs is leaving canadians behind
kelsey ferrill, moebius syndrome
rare disease day 2025: educating and advocating for people living with facial differences
old man suffering from arthritis in his hand
hereditary angioedema: types, signs and treatment in canada
copy of healthing article featured image - 1296x729 - 1
what it feels like: finding the silver lining in the uncertainties and spasms of cervical dystonia
young mother with child listening to doctor while sitting at table in her office
diagnosed with rett syndrome: managing care, finding support and celebrating small successes
young pharmacist using touchpad while checking a medicine inventory in drugstore.
new hope for families as health canada approves first rett syndrome treatment
monica and chelsea hugging. mother and daughter sharing a happy moment.
how i care for rett syndrome: 'i'm not giving up' on my daughter
 
developmental toys concept. cute infant baby playing with colorful building blocks at home, adorable little boy or girl wearing bodysuit sitting on carpet in living room, copy space
rett syndrome in canada: stats and resources  
ashley hickey -- rare disease report
shaping the future of rare disease care in canada: new report outlines key considerations for fund allocation
an adorable caucasian newborn child lying in hospital bed
spinal muscular atrophy screening expanded to all infants in canada: 'early diagnosis and effective treatment are critical'
protection, treatment, prevention and patronage health in hematology in blood health against diseases, pathologies, oncology concept photo. doctor surrounded lab tube with blood with hands on desk
hemophilia treatment trial paves the way for improved quality of life and greater understanding of the disease
blood donation concept. give blood save up to three lives. woman arm with the bandage plaster showing as a blood donation volunteer.
top hemophilia associations in canada: finding the right organization and resources for you
medical hospital: neurologist and neurosurgeon talk, use computer, analyse patient mri scan, diagnose brain. health clinic lab: two professional physicians look at functoning ct scan find treatment
study uncovers potential new way to reverse nerve damage in multiple sclerosis, other neurological diseases
sma, spinal muscular atrophy, written on wooden blocks, a rare disease in which, due to a genetic defect, neurons in the spinal cord responsible for muscle contraction and relaxation gradually die.
diagnosed with spinal muscular atrophy: managing support, resources and your care team
young boy, jeremy bray, driving a toy truck.
how i care for spinal muscular atrophy: go out and experience the world – just like everybody else
resources-banner
access hae resources
haettreatments-banner
discover more hae treatments
download
download hae self-assessment questionnaire
wihae
what is hae?
patientassoc
explore hae associations now
advertisement
 
adult man sitting in chair with iv drip during treatment session in clinic
what is car t-cell therapy? how immunotherapy is changing treatment options for cancer, diabetes and other autoimmune diseases
medication nurse wearing protective gloves get a needle ready for an injection - stock photo
new study uses immune cell therapy to put autoimmune disease into remission
close up of black woman hands holding a small red heart. small heart in the hands of a african woman. solidarity, charity and responsibility concept.
the severe impact of pulmonary arterial hypertension on canadians
disabled man in a motorized wheelchair when entering a van on an electric lift. in front of the vehicle, on the vehicle.
spinal muscular atrophy in canada: stats and impact on patients, caregivers and quality of life
julie-fabrywifl
what it feels like: fabry disease and finding the silver lining in community and advocacy
3d illustration showing swollen neurons with lamellar inclusions due to accumulation of gangliosides in lysosomes
fabry disease in canada: an overview of stats, symptoms and treatments
an illustration of a man with hands on face
machado: we need to stop blaming people for their disease
 
profile picture of woman jane sernoskie
rare disease day 2024: 'my lifelong dream of becoming a mother finally came true'
durhane wong-rieger.
rare disease day 2024: cord announces launch of canadian rare disease network
man holding a symbol of world rare disease day
rare disease associations yet to see impact of canada’s billion-dollar pledge
ultrasound upper abdomen showing flow in common bile duct after use color doppler.
bile duct cancer in canada: stats, survival rate and impact
male hand in blue protective gloves holding test tube with blood sample against background of microscope. makes express analysis for aids in the presence of patient in hospice chemical laboratory
gene therapy revolutionizing hemophilia treatment, unlocking new research opportunities
theres more to deciding drug prices than numbers
machado: the mess that is canada's healthcare system is proof of what happens when we ignore lived experience in favour of cost
1 in 12 canadians has a rare disease
'i am number 12' campaign reignites push to start building a rare disease strategy
snail on top of a watch
machado: canada's decision-makers have an all talk, no action, way about them and it stinks
advertisement