Rare disease awareness days serve an important purpose of informing the public, creating community, and raising money to support funding towards new research and treatments.
Below is a calander containing rare disease awareness days and months as well as more information about the disease if available.
| Date | Disease | More Information |
|---|---|---|
| June 1 | Lymphangioleiomyomatosis (LAM) Awareness Day | |
| June 1 | World Hypopara Awareness Day | Hypoparathyroidism |
| June 2 | Sweet’s Syndrome UK Day | |
| June 2 | Cancer Survivor’s Day | Cancers |
| June 7 | Transverse Myelitis Awareness Day | |
| June 9 | Batten Disease Awareness Day | Batten Disease Explained |
| June 10 – 16 | Carers Week | Advocacy |
| June 10 – 16 | Men’s Health Week | |
| June 10 | Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Day | An Overview of Progressive Familial Intrahepatic Cholestasis |
| June 10 | Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) Awareness Day | |
| June 11 | World KBG Syndrome Awareness Day | |
| June 15 | World Tay-Sachs Awareness Day | Overview of Tay Sachs Disease |
| June 16 | Rare Chromosome Awareness Day | |
| June 16 | Maple Syrup Urine Disease (MSUD) Awareness Day | |
| June 17 | CDKL5 Awareness Day | FDA Approves Ganaxolone to Treat Seizures in CDKL5 Deficiency Disorder |
| June 19 | World Sickle Cell Day | Sickle Cell Anemia: “The Pain is Always There” |
| June 23 | International Dravet Syndrome Awareness Day | What is Dravet Syndrome? |
| June 24 | World Pneumothorax Day | |
| June 25 | International Scoliosis Awareness Day | |
| June 28 | International Neonatal Screening Day | Newborn Screening and LSDs in the Neonatal Period Module |
| June 28 | International PKU Awareness Day | Phenylketonuria (PKU) Explained |
| June 29 | Rare Chromosome Disorder Awareness Day | |
| June 29 | World Scleroderma Day | Scleroderma |
| 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) | RNA-Based Therapy Shows Promise For Dravet Syndrome in Preclinical Studies | |
| Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month | An Overview of Progressive Familial Intrahepatic Cholestasis | |
| MdDS Awareness Month | ||
| Men’s Health Month | ||
| Myasthenia Gravis Awareness Month | FcRn and Myasthenia Gravis | |
| National Congenital Cytomegalovirus Awareness Month | ||
| Scleroderma Awareness Month | Scleroderma |
| Date | Disease | More Information |
|---|---|---|
| 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) | Glioblastoma |
| July 17 | Koolen-de-Vries Syndrome Awareness Day | |
| July 22 | International Fragile X Awareness Day | Fragile X Syndrome |
| July 22 | World Brain Day | Neurology and Nervous System Diseases |
| July 23 | World Castleman Disease Day | Castleman Disease Explained |
| 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 | Multiple Sulfatase Deficiency Explained |
| July 31 | Acute Necrotizing Encephalopathy (ANE) Awareness Day | |
| Month Long Events | ||
| Juvenile Arthritis Awareness Month | Overview of Juvenile Idiopathic Arthritis (JIA) | |
| National Cleft and Craniofacial Awareness Month | ||
| Sarcoma Awareness Month | Overview of Sarcomas | |
| UV Safety Month |
| Date | Disease | More Information |
|---|---|---|
| August 1 | World Lung Cancer Day | |
| August 3 | CLOVES Awareness Day | What Is CLOVES Syndrome? |
| 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 13 | Generalized Pustular Psoriasis Awareness Day | Generalized Pustular Psoriasis |
| 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 | Overview of Homozygous Familial Hypercholesterolemia |
| August 25 – 30 | Pheo Para Awareness Week | |
| Month Long Events | ||
| Gastroparesis Awareness Month | ||
| International Autoinflammatory Awareness Month | ||
| Spinal Muscular Atrophy Awareness Month | Spinal Muscular Atrophy |
| Date | Disease | More Information |
|---|---|---|
| September 7 | Still’s Disease Awareness Day | Still’s Disease Overview |
| September 7 | World Duchenne Awareness Day | Duchenne Muscular Dystrophy |
| 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 | Primary Biliary Cholangitis |
| September 14 | Myeloproliferative Neoplasms (MPN) Awareness Day | Myeloproliferative Neoplasms (MPNs) |
| September 15 | International Hypothalamic Hamartoma Awareness Day | |
| September 15 | Myotonic Dystrophy Day | What Is Myotonic Dystrophy Type 1 (DM1)? |
| September 15 | World Lymphoma Awareness Day | Cutaneous T-Cell Lymphoma |
| September 16 | Microvillus Inclusion Disease Awareness Day | |
| September 16 | Usher Syndrome Awareness Day | Usher Syndrome Overview |
| September 16 – 22 | World Mitochondrial Disease Week | Primary Mitochondrial Myopathy Explained |
| September 17 | Leigh Syndrome Awareness Day | |
| September 18 | Pitt-Hopkins Syndrome Awareness Day | |
| September 19 | Aortic Dissection Awareness Day | |
| September 21 | Myositis Awareness Day | |
| September 21 | Raspberry Day – Cavernoma Awareness Day (3rd Friday in September annually) | |
| September 22 | World Narcolepsy Day | An Overview of Narcolepsy |
| September 24 | Atypical Hemolytic Uremic Syndrome (aHUS) Awareness Day | Atypical Hemolytic Uremic Syndrome |
| September 24 | Bardet Biedl Syndrome Global Day | Bardet-Biedl Syndrome Patient and His Parents Describe Their Diagnostic Journey |
| September 24 | Familial Hypercholesterolemia Awareness Day | Overview of Homozygous Familial Hypercholesterolemia |
| September 25 | International Ataxia Awareness Day | Ataxia Telangiectasia |
| September 26 | Mesothelioma Awareness Day | |
| September 28 | Aarskog Syndrome Awareness Day | |
| September 29 | Retinitis Pigmentosa Awareness Day (last Sunday in September) | What Is Retinitis Pigmentosa? |
| September 30 | Limb Girdle Muscular Dystrophy Awareness Day | |
| September 30 | Rare Cancer Day | Cancers |
| Month Long Events | ||
| Blood Cancer Awareness Month | ||
| Childhood Cancer Awareness Month | Steady Decrease in Severe Health Problems for Childhood Cancer Survivors | |
| Craniofacial Acceptance Month | ||
| Hirschsprung Disease Awareness Month | ||
| International Hypothalamic Hamartoma Awareness Month | ||
| International Pain Awareness Month | ||
| ITP Awareness Month | ||
| Leukodystrophy Awareness Month | Metachromatic Leukodystrophy Explained | |
| National Immune Thrombocytopenic Purpura (ITP) Awareness Month | Congenital Thrombotic Thrombocytopenic Purpura (cTTP) Overview | |
| National Sickle Cell Awareness Month (US) | Sickle Cell Anemia | |
| National Vascular Disease Awareness Month | ||
| Newborn Screening Month | Improving Newborn Screening | |
| Ovarian Cancer Awareness Month | ||
| Polycystic Kidney Disease Awareness Month | What Is Autosomal Dominant Polycystic Kidney Disease (ADPKD)? | |
| Pulmonary Fibrosis Awareness Month | Overview of Pulmonary Sarcoidosis | |
| Reye’s Syndrome Awareness Month | ||
| STXBP1 Awareness Month | ||
| Urology Awareness Month |
| Date | Disease | More Information |
|---|---|---|
| October 1 | CACNA1C Awareness Day | |
| October 1 | GNAO1 Awareness Day | |
| October 1 | International Gaucher Day | Gaucher Disease |
| October 1 | Wolfram Syndrome Global Awareness Day | |
| October 5 | PFIC Awareness Day | Alagille Syndrome and PFIC |
| 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 | Musculoskeletal Diseases |
| October 14 | Global FPIES Day | |
| October 18 | Sudden Unexpected Death in Epilepsy (SUDEP) Action Day | US Epilepsy and Rare Syndromes at UCB |
| October 19 | International Niemann-Pick Disease Awareness Day | What Is Niemann-Pick Disease Type C (NPC)? |
| October 20 | International Mastocytosis & Mast Cell Diseases Awareness Day | What Is Mastocytosis? |
| October 22 | International Phelan-McDermid Syndrome Awareness Day | Phelan-McDermid Syndrome and the JAG201 Study |
| October 23 | PTEN Hamartoma Tumor Syndrome Awareness Day | |
| October 24 – 30 | Epidermolysis Bullosa (EB) Awareness Week | FDA Approves Gene Therapy for Epidermolysis Bullosa |
| October 25 | International Dwarfism Awareness Day | Overview of Achondroplasia (Short-Limbed Dwarfism) |
| October 25 | MDS World Awareness Day (myelodysplastic syndromes) | Myelodysplastic/Myeloproliferative Disease |
| October 26 | World Amyloidosis Day | What Is AL Amyloidosis? |
| October 30 | World Hypophosphatasia Day | |
| Month Long Events | ||
| Charcot-Marie-Tooth (CMT) Awareness Month | Charcot Marie Tooth Disease Type 1A | |
| Down Syndrome Awareness Month | ||
| Dysautonomia Awareness Month | ||
| Gaucher Disease Awareness Month | Gaucher Disease | |
| Homocystinuria (HCU) Awareness Month | What is Homocystinuria (HCU)? | |
| International Rett Syndrome Awareness Month | Rett Syndrome | |
| International XLH Awareness Month | ||
| Kabuki Syndrome Awareness Month | ||
| Liver Cancer Awareness Month | ||
| Niemann-Pick Disease Awareness Month | What Is Niemann-Pick Disease Type C (NPC)? | |
| Pituitary Awareness Month | ||
| Pregnancy and Infant Loss Awareness Month |
| Date | Disease | More Information |
|---|---|---|
| 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 | Lennox-Gastaut Syndrome |
| November 1 | World Acromegaly Awareness Day | Acromegaly Research |
| 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 | Dup15q Syndrome Overview |
| November 16 | World Sanfilippo Awareness Day | Sanfilippo Syndrome (Mucopolysaccharidosis III) |
| 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 | Overview of FOXG1 Syndrome | |
| Lung Cancer Awareness Month | ||
| Marfan Syndrome Awareness Month | ||
| Menkes Disease Awareness Month | Menkes Disease | |
| National Complex Regional Pain Syndrome (CRPS) Awareness Month | ||
| Pancreatic Cancer Awareness Month | ||
| Pulmonary Hypertension Awareness Month | Pulmonary Arterial Hypertension Overview | |
| National Family Caregiver Month (USA) | Caregiver Action Network |
| Date | Disease | More Information |
|---|---|---|
| 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 |
| Date | Disease | More Information |
|---|---|---|
| January 11 | Paget’s Awareness Day | Paget Disease of Bone, Familial |
| January 18 | AHC Awareness Day | |
| January 24 | International Alagille Syndrome Awareness Day | PFIC and Alagille Syndrome Studies |
| January 24 | Moebious Syndrome Awareness Day | |
| January 31 | Ehlers-Danlos Syndrom Awareness Day | Ehlers Danlos Syndrome |
| January 31 | Omphalocele Awareness Day | |
| Month Long Events | ||
| Alzheimer’s Awareness Month | Noninvasive Eye Scan Could Detect Key Signs of Alzheimer’s Disease | |
| Cervical Cancer Awareness Month | ||
| National Blood Donor Month | Hematologic Disorders | |
| National Glaucoma Awareness Month | ||
| National Birth Defects Prevention Month | A Brief History of Newborn Screening | |
| Thyroid Awareness Month | Hypoparathyroidism |
| Date | Disease | More Information |
|---|---|---|
| February 1 | World Aspergillosis Day | Aspergillosis |
| February 2 | Rheumatoid Awareness Day | |
| February 4 | World Cancer Day | Cancers |
| February 5 - 11 | 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 | US Epilepsy and Rare Syndromes at UCB |
| February 15 | International Angelman Syndrome Day | Angleman Syndrome Explained |
| February 15 | International Childhood Cancer Day | Steady Decrease in Severe Health Problems for Childhood Cancer Survivors |
| February 20 | International Ectodermal Dysplasia Awareness Day | Ectodermal Dysplasias |
| February 22 | World Encephalitis Day | Autoimmune Encephalitis: A Rapidly Changing Landscape |
| February 24 | International SCN2A Awareness Day | |
| February 25 | MAND Awareness Day | |
| February 28 | Progressive Osseous Heteroplasia Awareness Day | |
| February 28 | Rare Disease Day | Rare Disease Day 2025 |
| Month Long Events | ||
| Cholangiocarcinoma Awareness Month | ||
| Ectodermal Dysplasia Awareness Month | The National Foundation for Ectodermal Dysplasias (NFED) | |
| Raynauds Awareness Month | ||
| Turner Syndrome Awareness Month |
| Date | Disease | More Information |
|---|---|---|
| March 3 | International Twin Anemia Polycythemia Sequence (TAPS) Awareness Day | |
| March 8 | Potocki Lupski Syndrome Day | |
| March 11-17 | Grin2B Awareness Week | The GRIN2B Foundation |
| March 12 | Alloimmunisation and Hemolytic Disease Awareness Day | |
| March 12 | HDFN Awareness Day | |
| March 12 | World Glaucoma Day | |
| March 14 | World Kidney Day | Complement-Mediated Kidney Disorders: A Case Series Module |
| March 15 | Stiff Person Syndrome Awareness Day | Stiff Person Syndrome (SPS) |
| 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 | Warm Autoimmune Hemolytic Anemia (wAIHA) |
| March 25 | FND Awareness Day | |
| March 25 | National Cerebral Palsy Awareness Day | |
| March 26 | Purple Day – Epilepsy Awareness | |
| March 31 | World Lipodystrophy Day | Lipodystrophy Explained |
| Month Long Events | ||
| Alport Awareness Month | ||
| Bleeding Disorders Awareness Month | ||
| Brain Awareness Week (second week of March) | Neurology and Nervous System Diseases | |
| Brain Injury Awareness Month | Neurology and Nervous System Diseases | |
| Brain Tumor Awareness Month | Acromegaly and Pituitary Tumors | |
| 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 | Treatment Effect on Patient Pain and Quality of Life in Neuromyelitis Optica | |
| Ovarian Cancer Awareness Month | BRCA1 Hereditary Breast and Ovarian Cancer Syndrome | |
| Prostate Cancer Awareness Month | ||
| Trisomy Awareness Month | ||
| Wilsons Disease Awareness Month | What Is Wilson Disease? |
| Date | Disease | More Information |
|---|---|---|
| April 2 | World Autism Awareness Day | Autism Spectrum Disorder |
| April 2 | Porphyria Awareness Week | Porphyria |
| April 5 | Barth Syndrome Awareness Day | Barth Syndrome Explained |
| April 6 | Bohring-Opitz syndrome (BOS) Awareness Day | |
| April 6 | International Fabry Women’s Day (First Saturday of April annually) | Female Experiences With Fabry DiseaseOverview of Fabry Disease |
| April 7 | World Health Day | |
| April 10 | Adrenal Insufficiency Awareness Day | |
| April 12 | Gould Syndrome Awareness Day | |
| April 15 | International Pompe Disease Awareness Day | Pompe Disease Overview |
| April 15 | Global Waldenstrom’s Macroglobulinemia Awareness Day | Overview of Waldenström’s Macroglobulinemia |
| April 16 | Wolf Hirschhorn Syndrome (WHS) Awareness Day | |
| April 17 | World Haemophilia Day | What Is Hemophilia B? |
| 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 | Expanded Label of Treatment for Primary Immunodeficiencies |
| April 23 | Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day | Fibrodysplasia Ossificans Progressiva: Overview and Advocacy |
| April 25 | National DNA Day (US) | |
| April 28 | KIF1A Awareness Day | KIF1a Associated Neurological Disorder |
| April 29 | Undiagnosed Children’s Day | Undiagnosed Diseases Network Foundation: Providing Resources and Support for Undiagnosed Community |
| April 30 | AMKD (APOL1-mediated kidney disease) Awareness Day | |
| April 30 | Poland Syndrome Awareness Day | |
| April 30 | World Sarcoidosis Day | Sarcoidosis Explained |
| Month Long Events | ||
| Addison’s Disease Awareness Month | ||
| Adrenal insufficiency Awareness Month | FDA Approves New Formulation of Treatment for Adrenal Insufficiency | |
| Bowel Cancer Awareness Month | ||
| Fabry Disease Awareness Month | Fabry Disease: Overview, Diagnosis, and Personalized Treatment Plans | |
| HIE Awareness Month | ||
| National Minority Health Month | Leaving No One Behind: Rare Disease Day at the United Nations | |
| National Primary Immunodeficiency Awareness Month | Cutaquig Now Approved for Children With Primary Humoral Immunodeficiency | |
| Sarcoidosis Awareness Month | Sarcoidosis Explained | |
| Sjögren’s Awareness Month |
| Date | Disease | More Information |
|---|---|---|
| May 2 | PPA2 Awareness Day | |
| May 3 | World Alström Syndrome Day | |
| May 4 | Homozygous Familial Hypercholesterolemia (HoFH) Awareness day | Overview of Homozygous Familial Hypercholesterolemia |
| May 5 | World Ankylosing Spondylitis Day | |
| May 6 | Moyamoya Disease Day | |
| May 6 | Wishbone Day (Osteogenesis Imperfecta) | Osteogenesis Imperfecta Overview |
| May 7 | Cystinosis Awareness Day | Cystinosis Explained |
| May 8 | National Amyloidosis Day | What Is AL Amyloidosis? |
| May 10 | World Lupus Day | Lupus Overview |
| 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 14 | Apraxia Awareness Day | |
| May 15 | International MPS Awareness Day | Overview of Mucopolysaccharidosis Type I (MPS I) |
| May 15 | Tuberous Sclerosis Complex (TSC) Global Awareness Day | Initiation of the Astroscape Clinical Trial for Tuberous Sclerosis Complex and Focal Cortical Dysplasia |
| May 16 | Hereditary Angioedema (HAE) Awareness Day | Hereditary Angioedema (HAE) |
| May 16 | Global Accessibility Awareness Day | |
| May 17 | Neurofibromatosis Awareness Day | Neurofibromatosis |
| May 18 | Global Porphyria Awareness Day | Kristen Wheeden: American Porphyria Foundation and Disease Overview |
| May 22 | Neurofibromatosis Type 2 (NF2) Awareness Day | Neurofibromatosis |
| May 25 | Melanoma BRAF Awareness Day | FDA Approves Combination Therapy for Melanoma Mutation |
| May 26 | Lymphangiomatosis and Gorham’s Disease Awareness Day | |
| May 26 - June 2 | National Epilepsy Week | |
| May 29 | Addison’s Disease Awareness Day | |
| Month Long Events | ||
| Cystic Fibrosis Awareness Month | Cystic Fibrosis | |
| Ehlers-Danlos Syndrome Awareness Month | Vascular Ehlers-Danlos Syndrome (vEDS)Vascular Ehlers-Danlos Syndrome: Diagnosis and Advocacy | |
| Hemochromatosis Awareness Month | ||
| Huntington’s Disease Awareness Month | Huntington Disease Overview | |
| Ichthyosis Awareness Month | What Is Congenital Ichthyosis? | |
| Li-Fraumeni Syndrome/TP53 Awareness Month | ||
| Lupus Awareness Month | Lupus Nephritis Overview | |
| Mental Health Awareness Month | Mental Health and the Rare Disease Community | |
| Myositis Awareness Month | Inclusion Body Myositis | |
| Neurofibromatosis Awareness Month | Neurofibromatosis | |
| Prader-Willi Syndrome Awareness Month | ||
| Progressive Supranuclear Palsy (PSP) Awareness Month | ||
| PTEN Hamartoma Tumor Syndrome Awareness Month | ||
| Skin Cancer Awareness Month | Skin Conditions |