Raising Awareness for Rare: One Day at a Time

UpdatedSeptember 4, 2020

Awareness days, weeks or even months are opportunities to raise awareness, rally a community and raise funding to advance the mission of nonprofit organizations that serve patients living with a rare disease and their families.

By Stephanie Fischer MPS Awareness Day 2020

Awareness days, weeks or even months are opportunities to raise awareness, rally a community and raise funding to advance the mission of nonprofit organizations that serve patients 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 13th.

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 11: International Epilepsy Day
  • February 15: International Angelman Syndrome Day
  • February 24: SCN2A Awareness Day
  • February 28 or 29: Rare Disease Day

March

  • All month: Multiple Sclerosis Awareness Month
  • All month: Wilson Disease Awareness Month
  • All month: Neuromyelitis Optica Awareness Month
  • March 5: Cyclic Vomiting Syndrome Awareness Day
  • March 16-22: Grin2B Awareness Month
  • March 31: World Lipodystrophy Day

April

  • All month: Fabry Disease Awareness Month
  • April 12: Gould Syndrome Awareness Day
  • April 13: World Sarcoidosis Day
  • April 15: International Pompe Day
  • April 28: KIF1A Day
  • April 29: Undiagnosed Day

May

  • All month: ALS Awareness Month (US)
  • 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: Progressive Supranuclear Palsy (PSP) Awareness Month
  • May 6: World Moyamoya Day
  • May 7: Cystinosis Awareness Day
  • May 15: International Mucopolysaccharidosis Awareness Day
  • May 15: Myositis 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 (International)
  • All month: CDKL5 Awareness Month
  • All month: Dravet Syndrome Awareness Month (US)
  • All month: Myasthenia Gravis Awareness Month
  • All month: Scleroderma Awareness Month
  • June 17: CDKL5 Awareness Day
  • June 23: International Dravet Syndrome Awareness Day
  • June 23: X-linked Hypophosphatemia Awareness Day

July

  • July 22: Fragile X Awareness Day
  • July 23: World Sjogren’s Day
  • July 31: Acute Necrotizing Encephalopathy (ANE) 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 22: SATB2-Associated Syndrome Awareness Day
  • August 22: Malan Syndrome Awareness Day

September

  • All month: Charcot-Marie-Tooth Awareness Month
  • All month: Craniofacial Acceptance 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
  • September 7: Duchenne Muscular Dystrophy Awareness Day
  • September 16: Microvillus Inclusion Disease Awareness Day
  • September 22: World Narcolepsy Day
  • September 25: World Ataxia Awareness Day
  • September 30: Limb Girdle Muscular Dystrophy Awareness Day

October

  • All month: Rett Syndrome Awareness Month
  • All month: Homocystinuria (HCU) Awareness Month
  • October 1: International Gaucher Day
  • October 1: Rare Cancer Day
  • October 23: SUDEP Action Day
  • October 25-31: National Epidermolysis Bullosa Awareness Week

November

  • All month: FOXG1 Awareness Month
  • All month: National Complex Regional Pain Syndrome Awareness Month
  • First Monday: Color the World Orange Day for Complex Regional Pain Syndrome
  • November 1: International Lennox-Gastaut Syndrome Day
  • November 15: International 15q Day
  • November 16: World Sanfilippo Awareness Day
  • November 17: Smith-Magenis Syndrome Awareness Day
  • November 22: 22q Awareness Day
Originally posted at August 14, 2020

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