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Rare Disease Awareness Day Calendar

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 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 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 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 28thProgressive 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 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 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 15thGlobal Waldenstrom’s Macroglobulinemia 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 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 1st – Lymphangioleiomyomatosis (LAM) Awareness Day

June 1st – World Hypopara Awareness Day

June 2nd – Sweet’s Syndrome UK Day

June 2nd – Cancer Survivor’s 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 – Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) 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 24th – World Pneumothorax Day

June 25th – International Scoliosis Awareness Day

June 28thInternational Neonatal Screening Day

June 28th – International PKU Awareness 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 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 30thMultiple 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 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 – 30thPheo Para Awareness Week

Gastroparesis Awareness Month

International Autoinflammatory Awareness Month

Spinal Muscular Atrophy Awareness Month

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 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 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 9thNational 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

National Family Caregiver Month (USA)

December 1st – 7th – Crohn’s and Colitis Awareness Week

December 3rd – International Day Of Persons With A Disability

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