Awareness days, weeks or even months are opportunities to rally a community and raise funding to advance the mission of nonprofit organizations that serve individuals living with a rare disease and their families. Some organizations use an awareness day to mobilize the community to take action on legislation. Others work with supporters to get local or state proclamations from elected officials observing an awareness day, or to get buildings to light up to raise awareness such as for World Sarcoidosis Day on April 13.
By sharing information about a disease and how it affects them, patients or family members can help educate friends, family and the public in general which could help someone else get diagnosed sooner.
Not sure where to start? If there is an organization for your rare disease, check out the website to see if any awareness days are listed. If not, reach out to volunteer to help establish one. The Children’s Tumor Foundation has a toolkit on getting a proclamation and sample language that could be adapted for other rare diseases. Global Genes has a toolkit on Using Storytelling to Raise Awareness of Your Disease and another toolkit on Speak Easy: A Guide to Public Speaking which includes tips on finding speaking engagements and generating media coverage.
Below is an initial list of rare disease awareness events. Did we miss any? Please let us know by contacting us on social media or emailing us at community@allstripes.com. And join us in helping amplify voices of patients, parents and other advocates around the country (and world) as they raise awareness of their rare diseases!
January
- January 24: Moebius Syndrome Awareness Day
- January 28: Superior Mesenteric Artery (SMA) Syndrome Day
February
- February 9: International SCN8A Awareness Day
- February 11: International Epilepsy Day
- February 13-19: Duchenne Muscular Dystrophy Awareness Week
- February 15: International Angelman Syndrome Day
- February 20-27: FD/MAS Global Awareness Week
- February 24: SCN2A Awareness Day
- February 28 or 29: Rare Disease Day
March
- All month: GRI Awareness Month
- All month: Multiple Sclerosis Awareness Month
- All month: Neuromyelitis Optica Awareness Month
- All month: Trisomy Awareness Month
- All month: Wilson Disease Awareness Month
- March 5: Cyclic Vomiting Syndrome Awareness Day
- March 16-22: Grin2B Awareness Week
- March 31: World Lipodystrophy Day
April
- All month: Esophageal Cancer Awareness Month
- All month: Fabry Disease Awareness Month
- April 10-17: Porphyria Awareness Week
- April 12: Gould Syndrome Awareness Day
- April 13: World Sarcoidosis Day
- April 15: International Pompe Day
- April 17: World Hemophilia Day
- April 19: Congenital Diaphragmatic Hernia Awareness Day
- April 23: Fibrodysplasia Ossificans Progressiva Awareness Day
- April 28: KIF1A Day
- April 29: Undiagnosed Day
May
- All month: ALS Awareness Month
- All month: Cystic Fibrosis Awareness Month
- All month: Ehlers-Danlos Syndrome Awareness Month
- All month: Huntington’s Disease Awareness Month
- All month: Ichthyosis Awareness Month
- All month: Myositis Awareness Month
- All month: Prader-Willi Syndrome Awareness Month
- All month: Progressive Supranuclear Palsy (PSP) Awareness Month
- All month: PTEN Hamartoma Tumor Syndrome Awareness Month
- May 6: World Moyamoya Day
- May 7: Cystinosis Awareness Day
- May 14: Ring14 Awareness Day
- May 15: International Mucopolysaccharidosis Awareness Day
- May 15: Tuberous Sclerosis Complex (TSC) Global Awareness Day
- May 17: World Neurofibromatosis Awareness Day
- May 17: Neurofibromatosis Type 1 (NF1) Awareness Day
- May 22: Neurofibromatosis Type 2 (NF2) Awareness Day
- May 26: Lymphangiomatosis and Gorham’s Disease Awareness Day
June
- All month: ALS Awareness Month (Canada)
- All month: CDKL5 Awareness Month
- All month: Dravet Syndrome Awareness Month (US)
- All month: Myasthenia Gravis Awareness Month
- All month: Scleroderma Awareness Month
- June 1: World Hypoparathyroidism Awareness Day
- June 9: International Batten Disease Awareness Day
- June 17: CDKL5 Awareness Day
- June 20: World FSHD Day
- June 21: SYNGAP1 International Awareness Day
- June 23: International Dravet Syndrome Awareness Day
- June 23: X-linked Hypophosphatemia Awareness Day
July
- All month: Fragile X Syndrome Awareness Month
- July 22: Fragile X Awareness Day
- July 23: World Castleman Disease Day
- July 23: World Sjogren’s Day
- July 31: Acute Necrotizing Encephalopathy (ANE) Awareness Day
- Last Sunday: Jansen’s Disease Awareness Day
August
- All month: Spinal Muscular Atrophy Awareness Month
- All month: International Autoinflammatory Awareness Month
- August 3: CLOVES Awareness Day
- August 6: Klippel-Feil Syndrome Awareness Day
- August 8: Chromosome 8p Day
- August 15: Smith-Kingsmore Syndrome Awareness Day
- August 19: Malan Syndrome Awareness Day
- August 22: SATB2-Associated Syndrome Awareness Day
September
- All month: Charcot-Marie-Tooth Awareness Month
- All month: Craniofacial Acceptance Month
- All month: Desmoid Tumor Awareness Month
- All month: International Hypothalamic Hamartoma Awareness Month
- All month: Leukodystrophy Awareness Month
- All month: National Immune Thrombocytopenic Purpura (ITP) Awareness Month
- All month: Pulmonary Fibrosis Awareness Month
- All month: STXBP1 Awareness Month
- All month: Thyroid cancer Awareness Month
- 3rd week of September: Mitochondrial Disease Awareness Week
- September 7: Duchenne Muscular Dystrophy Awareness Day
- September 9: 9p Minus Awareness Day
- September 8: Lissencephaly Awareness Day
- September 15: International Hypothalamic Hamartoma Awareness Day
- September 16: Microvillus Inclusion Disease Awareness Day
- September 21: Myositis Awareness Day
- September 22: World Narcolepsy Day
- September 24: Atypical Hemolytic Uremic Syndrome (aHUS) Awareness Day
- September 24: Familial Hypercholesterolemia Awareness Day
- September 25: International Ataxia Awareness Day
- September 30: Limb Girdle Muscular Dystrophy Awareness Day
- September 30: Rare Cancer Day
October
- All month: Rett Syndrome Awareness Month
- All month: Gaucher Disease Awareness Month
- All month: Homocystinuria (HCU) Awareness Month
- All month: Niemann-Pick Disease Awareness Month
- All month: Kabuki Syndrome Awareness Month
- October 1: GNAO1 Awareness Day
- October 1: International Gaucher Day
- October 5: PFIC Awareness Day
- October 7: Trigeminal Neuralgia Day
- October 9: World PANDAS/PANS Awareness Day
- October 19: International Niemann-Pick Disease Awareness Day
- October 20: International Mastocytosis and Mast Cell Diseases Awareness Day
- October 23: PTEN Hamartoma Tumor Syndrome Awareness Day
- October 23: SUDEP Action Day
- October 25-31: National Epidermolysis Bullosa Awareness Week
- October 26: World Amyloidosis Day
November
- All month: FOXG1 Awareness Month
- All month: National Complex Regional Pain Syndrome (CRPS) Awareness Month
- 1st Monday: Color the World Orange Day for Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy
- November 1: International Lennox-Gastaut Syndrome Day
- November 6: Familial Chylomicronemia Syndrome (FCS) Awareness Day
- November 15: International 15q Day
- November 16: World Sanfilippo Awareness Day
- November 17: Smith-Magenis Syndrome Awareness Day
- November 22: 22q Awareness Day
