Rare Disease Awareness Days

Explore key awareness days and months celebrated in Canada and around the world to recognize, raise awareness, and stand with individuals and families affected by rare diseases.

  • January 11 – Paget’s Awareness Day
  • January 18 – AHC Awareness Day
  • January 24 – International Alagille Syndrome Awareness Day
  • January 24 – Moebious Syndrome Awareness Day
  • January 31 – Day of the Zebra
  • January 31 – Omphalocele Awareness Day 
  • Month long events
    • Alzheimer’s Awareness Month (Canada)
    • Cervical Cancer Awareness Month
    • National Birth Defects Prevention Month
    • National Blood Donor Month
    • National Glaucoma Awareness Month
    • Thyroid Awareness Month
  • April 2 – World Autism Awareness Day
  • April 5 – Barth Syndrome Awareness Day
  • April 6 – Bohring-Opitz syndrome (BOS) Awareness Day
  • April 6 – International Fabry Women’s Day (First Saturday of April annually)
  • April 7 – World Health Day
  • April 10 – Adrenal Insufficiency Awareness Day
  • April 12– Gould Syndrome Awareness Day
  • April 15– International Pompe Disease Awareness Day
  • April 15– Global Waldenstrom’s Macroglobulinemia Awareness Day
  • April 16– Wolf Hirschhorn Syndrome (WHS) Awareness Day
  • April 17– World Haemophilia Day
  • April 19– Congenital Diaphragmatic Hernia Awareness Day
  • April 20– Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness day
  • April 22 – 29 – World Primary Immunodeficiency Week
  • April 23 – Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day
  • April 25– National DNA Day (US)
  • April 28– KIF1A Awareness Day
  • April 29–Global Undiagnosed Day
  • April 30– AMKD (APOL1-mediated kidney disease) Awareness Day
  • April 30– Poland Syndrome Awareness Day
  • April 30– World Sarcoidosis Day
  • Month long events
    • Addison’s Disease Awareness Month
    • Adrenal insufficiency Awareness Month
    • Bowel Cancer Awareness Month
    • Fabry Disease Awareness Month
    • HIE Awareness Month
    • National Minority Health Month
    • National Primary Immunodeficiency Awareness Month
    • Sarcoidosis Awareness Month
    • Sjögren’s Awareness Month
  • July 10 – Chronic Disease Day
  • July 10 – International Glut1 Awareness Day
  • July 13 – Gastrointestinal Stromal Tumors (GIST) Awareness Day
  • July 17 – Glioblastoma Awareness Day (Third Wednesday in July, annually)
  • July 17 – Koolen-de-Vries Syndrome Awareness Day
  • July 22 – International Fragile X Awareness Day
  • July 22 – World Brain Day
  • July 23 – World Castleman Disease Day
  • July 23 – World Sjogren’s Day
  • July 28 – World Hepatitis Day
  • July 29 – Legg-Calve-Perthes Awareness Day
  • July 30 – International Jansen’s Day
  • July 30 – Multiple Sulfatase Deficiency (MSD) Awareness Day
  • July 31 – Acute Necrotizing Encephalopathy (ANE) Awareness Day
  • Month long events
    • Juvenile Arthritis Awareness Month
    • National Cleft and Craniofacial Awareness Month
    • Sarcoma Awareness Month
  • October 1 – CACNA1C Awareness Day
  • October 1 – GNAO1 Awareness Day
  • October 1 – International Gaucher Day
  • October 1 – Wolfram Syndrome Global Awareness Day
  • October 4 – Bardet Biedl Syndrome Global Day
  • October 5 – PFIC Awareness Day
  • October 7 – Trigeminal Neuralgia Day
  • October 9 – Global NCBRS Awareness Day
  • October 9 – World PANS/PANDAS Awareness Day
  • October 12-20 – Bone and Joint Health National Awareness Week
  • October 14 – Global FPIES Day
  • October 17 –World Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) Day
  • October 18 – Sudden Unexpected Death in Epilepsy (SUDEP) Action Day
  • October 19 – International Niemann-Pick Disease Awareness Day
  • October 20 – International Mastocytosis & Mast Cell Diseases Awareness Day
  • October 22 – International Phelan-McDermid Syndrome Awareness Day 
  • October 23 – PTEN Hamartoma Tumor Syndrome Awareness Day
  • October 24 – 30 – Epidermolysis Bullosa (EB) Awareness Week
  • October 25 – International Dwarfism Awareness Day
  • October 25 – MDS World Awareness Day (myelodysplastic syndromes)
  • October 26 – World Amyloidosis Day
  • October 30 – World Hypophosphatasia Day
  • Month long events
    • Charcot-Marie-Tooth (CMT) Awareness Month
    • Down Syndrome Awareness Month
    • Dysautonomia Awareness Month
    • Gaucher Disease Awareness Month
    • Homocystinuria (HCU) Awareness Month
    • International Rett Syndrome Awareness Month
    • International XLH Awareness Month
    • Kabuki Syndrome Awareness Month
    • Liver Cancer Awareness Month 
    • Niemann-Pick Disease Awareness Month
    • Pituitary Awareness Month
    • Pregnancy and Infant Loss Awareness Month
  • February 1 – World Aspergillosis Day
  • February 2 – Rheumatoid Awareness Day
  • February 4 – World Cancer Day
  • February 5 – Feeding Tube Awareness Week
  • February 5-11 – Children’s Mental Health Week
  • February 7 – Congenital Heart Defect Awareness Week
  • February 9 – International SCN8A Awareness Day
  • February 12 – International Epilepsy Day
  • February 15 – International Angelman Syndrome Day
  • February 15 – International Childhood Cancer Day
  • February 20 – International Ectodermal Dysplasia Awareness Day
  • February 22 – World Encephalitis Day
  • February 24 – International SCN2A Awareness Day
  • February 25 – MAND Awareness Day
  • February 28 – Progressive Osseous Heteroplasia Awareness Day
  • February 28 – Rare Disease Day (February 29th in a leap year)
  • Month long events
    • Cholangiocarcinoma Awareness Month
    • Ectodermal Dysplasia Awareness Month
    • Raynauds Awareness Month
    • Turner Syndrome Awareness Month
  • May 2 – PPA2 Awareness Day
  • May 3 – World Alström Syndrome Day
  • May 4 – Homozygous Familial Hypercholesterolemia (HoFH) Awareness day
  • May 5 – World Ankylosing Spondylitis Day
  • May 5 – World Pulmonary Hypertension Day
  • May 6 – Moyamoya Day
  • May 6 – Wishbone Day (Osteogenesis Imperfecta)
  • May 7 – Cystinosis Awareness Day
  • May 8 – National Amyloidosis Day
  • May 10 – World Lupus Day
  • May 11 – International Cornelia de Lange Syndrome (CdLS) Awareness Day (Second Saturday of May, annually)
  • May 12 – International Awareness Day for Chronic Immunological and Neurological Diseases
  • May 12 – World Fibromyalgia Awareness Day
  • May 13 – SLC13A5 Epilepsy International Awareness Day
  • May 14 – IgA Nephropathy Awareness day 
  • May 14 – Apraxia Awareness Day
  • May 15 – International MPS Awareness Day
  • May 15 – Tuberous Sclerosis Complex (TSC) Global Awareness Day
  • May 16 – Hereditary Angioedema (HAE) Awareness Day
  • May 16 – Global Accessibility Awareness Day
  • May 17 – Neurofibromatosis Awareness Day
  • May 18 – Global Porphyria Awareness Day
  • May 22 – Neurofibromatosis Type 2 (NF2) Awareness Day
  • May 25 – Melanoma BRAF Awareness Day
  • May 26 – Lymphangiomatosis and Gorham’s Disease Awareness Day
  • May 26-June 2 – National Epilepsy Week
  • May 29 – Addison’s Disease Awareness Day
  • Last Thursday in May annually – World Multiple Sclerosis Day
  • Month long events
    • Cystic Fibrosis Awareness Month
    • Ehlers-Danlos Syndrome Awareness Month
    • Hemochromatosis Awareness Month
    • Huntington’s Disease Awareness Month
    • Ichthyosis Awareness Month
    • Li-Fraumeni Syndrome/TP53 Awareness Month
    • Lupus Awareness Month
    • Mental Health Awareness Month
    • Myositis Awareness Month
    • Neurofibromatosis Awareness Month
    • Prader-Willi Syndrome Awareness Month
    • Progressive Supranuclear Palsy (PSP) Awareness Month
    • PTEN Hamartoma Tumor Syndrome Awareness Month
    • Skin Cancer Awareness Month
  • August 1 – World Lung Cancer Day
  • August 3 – CLOVES Awareness Day
  • August 6 – Klippel-Feil Syndrome Awareness Day
  • August 7 – Dazzle4Rare Awareness Week
  • August 8 – Chromosome 8p Day
  • August 8 – Severe ME/CFS Awareness Day
  • August 15 – Smith-Kingsmore Syndrome Awareness Day
  • August 19 – Malan Syndrome Awareness Day
  • August 22 – SATB2-Associated Syndrome Awareness Day
  • August 24 – Familial Hypercholesterolemia Awareness Day
  • August 25 – 30 – Pheo Para Awareness Week
  • Month long events
    • Gastroparesis Awareness Month
    • International Autoinflammatory Awareness Month
    • Spinal Muscular Atrophy Awareness Month
    • Short Bowel Syndrome Awareness Month
  • November 1 – FCS Awareness Day( first Friday in November annually)
  • November 1 – Color the World Orange Day for Complex Regional Pain Syndrome
  • November 1 – International Lennox-Gastaut Syndrome Awareness Day 
  • November 1 – World Acromegaly Awareness Day
  • November 9 – National Microtia Awareness Day
  • November 10 –  World Neuroendocrine Tumor Awareness Day
  • November 12 – FFI and Prion Disease International Awareness Day
  • November 13 – Schinzel-Giedion Syndrome Awareness Day
  • November 15 – International 15q Day
  • November 16 – World Sanfilippo Awareness Day
  • November 17 – Smith-Magenis Syndrome Awareness Day
  • November 18 – World COPD Day
  • November 22 – Emanuel Syndrome Awareness Day
  • Month long events
    • Alpha-1 Awareness Month
    • FOXG1 Awareness Month
    • Lung Cancer Awareness Month
    • Marfan Syndrome Awareness Month
    • Menkes Disease Awareness Month
    • National Complex Regional Pain Syndrome (CRPS) Awareness Month
    • Pancreatic Cancer Awareness Month
    • Pulmonary Hypertension Awareness Month
  • March 3 – International Twin Anemia Polycythemia Sequence (TAPS) Awareness Day
  • March 8 – Potocki Lupski Syndrome Day
  • March 11-17 – Grin2B Awareness Week
  • March 12 – Alloimmunisation and Hemolytic Disease Awareness Day
  • March 12 – HDFN Awareness Day
  • March 12 – World Glaucoma Day
  • March 14 – World Kidney Day
  • March 15 – Stiff Person Syndrome Awareness Day
  • March 15 – World Sleep Day
  • March 16 – TUBB3 Awareness Day
  • March 19-24 – International PHACE Syndrome Awareness Week
  • March 20 – International CHAMP1 Awareness Day
  • March 21 – World Down Syndrome Day
  • March 25 – Autoimmune Hemolytic Anemia (AIHA) Awareness Day
  • March 25 – FND Awareness Day
  • March 25 – National Cerebral Palsy Awareness Day
  • March 26 – Purple Day – Epilepsy Awareness
  • March 31 – World Lipodystrophy Day
  • Month long events
    • Alport Awareness Month
    • Amyloidosis Awareness Month
    • Bleeding Disorders Awareness Month
    • Brain Awareness Week (second week of March)
    • Brain Injury Awareness Month
    • Brain Tumor Awareness Month
    • Colorectal Cancer Awareness Month
    • Developmental Disabilities Awareness Month
    • GRI Awareness month
    • National Colorectal Cancers Awareness Month
    • National Sleep Awareness Week (second week of March)
    • Neuromyelitis Optica Awareness Month
    • Ovarian Cancer Awareness month
    • Prostate Cancer Awareness Month
    • Trisomy Awareness Month
    • Wilsons Disease Awareness Month
    • Multiple Sclerosis Awareness Month
  • June 1 – Lymphangioleiomyomatosis (LAM) Awareness Day
  • June 1 – World Hypopara Awareness Day
  • June 2 – Sweet’s Syndrome UK Day
  • June 2 – Cancer Survivor’s Day
  • June 7 – Transverse Myelitis Awareness Day
  • June 9 – Batten Disease Awareness Day
  • June 10 – 16 – Carers Week
  • June 10 – Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Day
  • June 10 – Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) Awareness Day
  • June 10 – 16 – Men’s Health Week
  • June 11 – World KBG Syndrome Awareness Day
  • June 12 – International DDX3X Day
  • June 15 – World Tay-Sachs Awareness Day
  • June 16 – Rare Chromosome Awareness Day
  • June 16 – Maple Syrup Urine Disease (MSUD) Awareness Day
  • June 17 – CDKL5 Awareness Day
  • June 19 – World Sickle Cell Day
  • June 23 – International Dravet Syndrome Awareness Day
  • June 24 – World Pneumothorax Day
  • June 25 – International Scoliosis Awareness Day
  • June 28 – International Neonatal Screening Day
  • June 28 – International PKU Awareness Day
  • June 29 – Rare Chromosome Disorder Awareness Day
  • June 29 – World Scleroderma Day
  • Month long events
    • ALS Awareness Month (Canada)
    • Antiphospholipid syndrome (APS) Awareness Month
    • CDKL5 Awareness Month
    • Congenital Adrenal Hyperplasia (CAH) Awareness Month
    • CMV Awareness Month
    • Dravet Syndrome Awareness Month (US)
    • Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month
    • MdDS Awareness Month
    • Men’s Health Month
    • Myasthenia Gravis Awareness Month
    • National Congenital Cytomegalovirus Awareness Month
    • Scleroderma Awareness Month
  • September 7 – Still’s Disease Awareness Day
  • September 7 – World Duchenne Awareness Day
  • September 8 – Lissencephaly Awareness Day
  • September 9 – 9p Minus Awareness Day
  • September 9 – Polymocrogyria Awareness Day
  • September 11 – International Primary Biliary Cholangitis (PBC) Awareness Day
  • September 14 – Myeloproliferative Neoplasms (MPN) Awareness Day
  • September 15 – International Hypothalamic Hamartoma Awareness Day
  • September 15 – Myotonic Dystrophy Day
  • September 15 – World Lymphoma Awareness Day
  • September 16 – Microvillus Inclusion Disease Awareness Day
  • September 16 – Usher Syndrome Awareness Day
  • September 16 – 22 – World Mitochondrial Disease Week
  • September 17 – Leigh Syndrome Awareness Day
  • September 18 – Mitochondrial Disease Awareness Week
  • September 19 – Aortic Dissection Awareness Day
  • September 18 – Pitt-Hopkins Syndrome Awareness Day
  • September 21 – Myositis Awareness Day
  • September 21 – Raspberry Day – Cavernoma Awareness Day (3rd Friday in September annually)
  • September 22 – World Narcolepsy Day
  • September 24 – Atypical Hemolytic Uremic Syndrome (aHUS) Awareness Day
  • September 24 – Bardet Biedl Syndrome Global Day
  • September 24 – Familial Hypercholesterolemia Awareness Day
  • September 25 – International Ataxia Awareness Day
  • September 26 – Mesothelioma Awareness Day
  • September 28 – Aarskog Syndrome Awareness Day
  • September 29 – Retinitis Pigmentosa Awareness Day (last Sunday in September)
  • September 30 – Limb Girdle Muscular Dystrophy Awareness Day
  • September 30 – Rare Cancer Day
  • Month long events
    • Blood Cancer Awareness Month
    • Childhood Cancer Awareness Month
    • Craniofacial Acceptance Month
    • Duchenne Muscular Dystrophy Awareness Month
    • Hirschsprung Disease Awareness Month
    • International Hypothalamic Hamartoma Awareness Month
    • International Pain Awareness Month
    • ITP Awareness Month
    • Leukodystrophy Awareness Month
    • National Immune Thrombocytopenic Purpura (ITP) Awareness Month
    • National Sickle Cell Awareness Month (US)
    • National Vascular Disease Awareness Month
    • Newborn Screening Month
    • Ovarian Cancer Awareness Month
    • Polycystic Kidney Disease Awareness Month
    • Pulmonary Fibrosis Awareness Month
    • Reye’s Syndrome Awareness Month
    • STXBP1 Awareness Month
    • Urology Awareness Month
  • December 1 – 7 – Crohn’s and Colitis Awareness Week
  • December 2 – 8 – National Grief Awareness Week
  • December 3 – International Day Of Persons With A Disability
  • December 4 – Pallister-Killian Syndrome (PKS) Awareness Day
  • December 6 – 2nd International Wilson Disease Awareness Day

Know of an awareness day we should add? Let us know — we’re always looking to keep the calendar as accurate and up to date as possible.

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