Rare Disease Awareness Day Calendar
Welcome to our RARE Disease awareness day calendar.
Have we missed your rare disease awareness day or month? Please let us know by emailing us at hello@rarerevolutionmagazine.com and we can add them.
The list below is not exhaustive. Inclusion on the list or omission from it does not reflect an endorsement or otherwise of that group by RARE Revolution Magazine.
January
January 11th – Paget’s Awareness Day
January 18th – AHC Awareness Day
January 24th – International Alagille Syndrome Awareness Day
January 24th – Moebious Syndrome Awareness Day
January 31st – Day of the Zebra
January 31st – Omphalocele Awareness Day
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
February
February 1st – World Aspergillosis Day
February 2nd – Rheumatoid Awareness Day
February 4th – World Cancer Day
February 5th – Feeding Tube Awareness Week
February 5th-11th – Children’s Mental Health Week
February 7th – Congenital Heart Defect Awareness Week
February 9th – International SCN8A Awareness Day
February 12th – International Epilepsy Day
February 15th – International Angelman Syndrome Day
February 15th – International Childhood Cancer Day
February 20th – International Ectodermal Dysplasia Awareness Day
February 22nd – World Encephalitis Day
February 24th – International SCN2A Awareness Day
February 25th – MAND Awareness Day
February 28th – Progressive Osseous Heteroplasia Awareness Day
February 28th – Rare Disease Day (February 29th in a leap year)
Cholangiocarcinoma Awareness Month
Ectodermal Dysplasia Awareness Month
Raynauds Awareness Month
Turner Syndrome Awareness Month
March
March 3rd – International Twin Anemia Polycythemia Sequence (TAPS) Awareness Day
March 8th – Potocki Lupski Syndrome Day
March 11th-17th – Grin2B Awareness Week
March 12th – Alloimmunisation and Hemolytic Disease Awareness Day
March 12th – HDFN Awareness Day
March 12th – World Glaucoma Day
March 14th – World Kidney Day
March 15th – Stiff Person Syndrome Awareness Day
March 15th – World Sleep Day
March 16th – TUBB3 Awareness Day
March 19th – 24th – International PHACE Syndrome Awareness Week
March 20th – International CHAMP1 Awareness Day
March 21st – World Down Syndrome Day
March 25th – Autoimmune Hemolytic Anemia (AIHA) Awareness Day
March 25th – FND Awareness Day
March 25th – National Cerebral Palsy Awareness Day
March 26th – Purple Day – Epilepsy Awareness
March 31st – World Lipodystrophy Day
Alport 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
April
April 2nd – World Autism Awareness Day
April 2nd – Porphyria Awareness Week
April 5th – Barth Syndrome Awareness Day
April 6th – Bohring-Opitz syndrome (BOS) Awareness Day
April 6th – International Fabry Women’s Day (First Saturday of April annually)
April 7th – World Health Day
April 10th – Adrenal Insufficiency Awareness Day
April 12th – Gould Syndrome Awareness Day
April 15th – International Pompe Disease Awareness Day
April 16th – Wolf Hirschhorn Syndrome (WHS) Awareness Day
April 17th – World Haemophilia Day
April 19th – Congenital Diaphragmatic Hernia Awareness Day
April 20th – Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness day
April 22nd – 29th – World Primary Immunodeficiency Week
April 23rd – Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day
April 25th – National DNA Day (US)
April 28th – KIF1A Awareness Day
April 29th – Undiagnosed Children’s Day
April 30th – AMKD (APOL1-mediated kidney disease) Awareness Day
April 30th – Poland Syndrome Awareness Day
April 30th – World Sarcoidosis Day
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
May
May 3rd – World Alström Syndrome Day
May 5th – World Ankylosing Spondylitis Day
May 6th – Moyamoya Day
May 6th – Wishbone Day (Osteogenesis Imperfecta)
May 7th – Cystinosis Awareness Day
May 8th – National Amyloidosis Day
May 10th – World Lupus Day
May 11th – International Cornelia de Lange Syndrome (CdLS) Awareness Day (Second Saturday of May, annually)
May 12th – International Awareness Day for Chronic Immunological and Neurological Diseases
May 12th – World Fibromyalgia Awareness Day
May 14th – Apraxia Awareness Day
May 15th – International MPS Awareness Day
May 15th – Tuberous Sclerosis Complex (TSC) Global Awareness Day
May 16th – Global Accessibility Awareness Day
May 17th – Neurofibromatosis Awareness Day
May 18th – Global Porphyria Awareness Day
May 22nd – Neurofibromatosis Type 2 (NF2) Awareness Day
May 25th – Melanoma BRAF Awareness Day
May 26th – Lymphangiomatosis and Gorham’s Disease Awareness Day
May 26th-June 2nd – National Epilepsy Week
May 29th – Addison’s Disease Awareness Day
Last Thursday in May annually – World Multiple Sclerosis Day
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
June
June 1st – Lymphangioleiomyomatosis (LAM) Awareness Day
June 1st – World Hypopara Awareness Day
June 2nd – Sweet’s Syndrome UK Day
June 7th – Transverse Myelitis Awareness Day
June 9th – Batten Disease Awareness Day
June 10th – 16th – Carers Week
June 10th – Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Day
June 10th – 16th – Men’s Health Week
June 11th – World KBG Syndrome Awareness Day
June 15th – World Tay-Sachs Awareness Day
June 16th – Rare Chromosome Awareness Day
June 16th – Maple Syrup Urine Disease (MSUD) Awareness Day
June 17th – CDKL5 Awareness Day
June 19th – World Sickle Cell Day
June 23rd – International Dravet Syndrome Awareness Day
June 25th – International Scoliosis Awareness Day
June 28th – International Neonatal Screening Day
June 29th – Rare Chromosome Disorder Awareness Day
June 29th – World Scleroderma Day
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
July
July 10th – Chronic Disease Day
July 10th – International Glut1 Awareness Day
July 13th – Gastrointestinal Stromal Tumors (GIST) Awareness Day
July 17th – Glioblastoma Awareness Day (Third Wednesday in July, annually)
July 17th – Koolen-de-Vries Syndrome Awareness Day
July 22nd – International Fragile X Awareness Day
July 22nd – World Brain Day
July 23rd – World Castleman Disease Day
July 23rd– World Sjogren’s Day
July 28th – World Hepatitis Day
July 29th – Legg-Calve-Perthes Awareness Day
July 30th – International Jansen’s Day
July 30th – Multiple Sulfatase Deficiency (MSD) Awareness Day
July 31st – Acute Necrotizing Encephalopathy (ANE) Awareness Day
Juvenile Arthritis Awareness Month
National Cleft and Craniofacial Awareness Month
Sarcoma Awareness Month
UV Safety Month
August
August 1st – World Lung Cancer Day
August 3rd – CLOVES Awareness Day
August 6th – Klippel-Feil Syndrome Awareness Day
August 7th – Dazzle4Rare Awareness Week
August 8th – Chromosome 8p Day
August 8th – Severe ME/CFS Awareness Day
August 15th – Smith-Kingsmore Syndrome Awareness Day
August 19th – Malan Syndrome Awareness Day
August 22nd – SATB2-Associated Syndrome Awareness Day
August 24th – Familial Hypercholesterolemia Awareness Day
August 25th – 30th – Pheo Para Awareness Week
Gastroparesis Awareness Month
International Autoinflammatory Awareness Month
Spinal Muscular Atrophy Awareness Month
September
September 7th – Still’s Disease Awareness Day
September 7th – World Duchenne Awareness Day
September 8th – Lissencephaly Awareness Day
September 9th – 9p Minus Awareness Day
September 9th – Polymocrogyria Awareness Day
September 11th – International Primary Biliary Cholangitis (PBC) Awareness Day
September 14th – Myeloproliferative Neoplasms (MPN) Awareness Day
September 15th – International Hypothalamic Hamartoma Awareness Day
September 15th – Myotonic Dystrophy Day
September 15th – World Lymphoma Awareness Day
September 16th – Microvillus Inclusion Disease Awareness Day
September 16th – Usher Syndrome Awareness Day
September 16th – 22nd – World Mitochondrial Disease Week
September 18th – Mitochondrial Disease Awareness Week
September 18th – Pitt-Hopkins Syndrome Awareness Day
September 21st – Myositis Awareness Day
September 21st – Raspberry Day – Cavernoma Awareness Day (3rd Friday in September annually)
September 22nd – World Narcolepsy Day
September 24th – Atypical Hemolytic Uremic Syndrome (aHUS) Awareness Day
September 24th – Bardet Biedl Syndrome Global Day
September 25th – International Ataxia Awareness Day
September 26th – Mesothelioma Awareness Day
September 28th – Aarskog Syndrome Awareness Day
September 29th – Retinitis Pigmentosa Awareness Day (last Sunday in September)
September 30th – Limb Girdle Muscular Dystrophy Awareness Day
September 30th – Rare Cancer Day
Blood Cancer Awareness Month
Childhood Cancer Awareness Month
Craniofacial Acceptance 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
October
October 1st – CACNA1C Awareness Day
October 1st – GNAO1 Awareness Day
October 1st – International Gaucher Day
October 1st – Wolfram Syndrome Global Awareness Day
October 5th – PFIC Awareness Day
October 7th – Trigeminal Neuralgia Day
October 9th – Global NCBRS Awareness Day
October 9th – World PANS/PANDAS Awareness Day
October 12th-20th – Bone and Joint Health National Awareness Week
October 14th – Global FPIES Day
October 18th – Sudden Unexpected Death in Epilepsy (SUDEP) Action Day
October 19th – International Niemann-Pick Disease Awareness Day
October 20th – International Mastocytosis & Mast Cell Diseases Awareness Day
October 22nd – International Phelan-McDermid Syndrome Awareness Day
October 23rd – PTEN Hamartoma Tumor Syndrome Awareness Day
October 24th – 30th – Epidermolysis Bullosa (EB) Awareness Week
October 25th – International Dwarfism Awareness Day
October 25th – MDS World Awareness Day (myelodysplastic syndromes)
October 26th – World Amyloidosis Day
October 30th – World Hypophosphatasia Day
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
November
November 1st – Color the World Orange Day for Complex Regional Pain Syndrome
November 1st – International Lennox-Gastaut Syndrome Awareness Day
November 1st – World Acromegaly Awareness Day
November 9th – National Microtia Awareness Day
November 10th – World Neuroendocrine Tumor Awareness Day
November 12th – FFI and Prion Disease International Awareness Day
November 13th – Schinzel-Giedion Syndrome Awareness Day
November 15th – International 15q Day
November 16th – World Sanfilippo Awareness Day
November 17th – Smith-Magenis Syndrome Awareness Day
November 18th – World COPD Day
November 22nd – Emanuel Syndrome Awareness Day
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
December
December 1st – 7th – Crohn’s and Colitis Awareness Week
December 3rd – International Day Of Persons With A Disability
