Observed on the final day of February each year, Rare Disease Day is an internationally acknowledged event dedicated to raising awareness among the public and policy makers about rare diseases and the impact they have on the lives of patients. This day serves as an opportunity to celebrate the resilience of those impacted by these conditions, and to foster important dialogue around the critical need for ongoing research, enhanced healthcare protocols, and innovative treatments.
By celebrating Rare Disease Day, we express our solidarity and stand alongside the thousands of people worldwide who live with these unique health challenges.
History of Rare Disease Day
Rare Disease Day is an international event aimed at increasing awareness of rare diseases and the need for access to treatment for those affected and their loved ones. This significant day traces its roots back to 2008.
The inception of Rare Disease Day was a brainchild of EURORDIS, the European Rare Diseases Organisation. They aimed to shine a light on conditions that weren’t as widely recognised or understood as more common diseases. After sharing this concept with global patient organisations, they launched the first Rare Disease Day on February 29th, 2008 - a date that fits perfectly with its theme by only appearing every four years.
The objective was to gather an international consortium advocating for research into rare diseases and offering those directly affected a platform to voice their experiences. The inaugural Rare Disease Day was observed in 18 countries, through events at every level - local, regional and national.
The growth of this event since its beginnings has been substantial; by 2017, it was celebrated in over 90 countries globally, with patient advocacy organisations, government institutions, research bodies and healthcare providers all joining the cause. Each year a new theme is chosen - past themes have included subjects such as research and the patient voice.
Rare Disease Day Timeline
Hippocrates Describes Rare Diseases
Hippocrates, the Father of Medicine, described rare diseases like Alkaptonuria and Hemophilia.
Orphan Drug Act
The Orphan Drug Act was passed in the United States to encourage the development of treatments for rare diseases.
First Rare Disease Day
The first rare disease day was held on February 29, 2008. It was organized by the European Organisation for Rare Diseases (EURODIS).
First Gene Therapy Approved in the US
The first gene therapy for a rare disease (acute lymphoblastic leukemia) was approved by the FDA in the United States.
Global Participation
80 nations participated in the events organized during Rare Disease Day.
Rare is Many
2021 Rare Disease Day's slogan was Rare is Many. It emphasised the need for improved social opportunity, equality and inclusivity in the society.
Ideas to Celebrate Rare Disease Day
Social Media Awareness Campaign
Kickstart a unique campaign across various social media channels, like Facebook, Instagram, and Twitter. The campaign aims to disperse crucial facts, information, and anecdotes about patients battling rare diseases. It’s a great way to broaden the understanding of the masses about such conditions.
Virtual Webinar
Plan and host a virtual session featuring healthcare professionals and those living with rare diseases. The interaction will provide a stage for them to convey their life experiences and share their journey battling these conditions. It’s a great opportunity to teach the audience about rare diseases and their impact on the individuals involved.
School/Community Outreach
Join forces with local schools and community places to disperse information regarding rare diseases. You could conduct presentations, host question-answer rounds and distribute educational resources, thereby pitching in the efforts to educate the public about these conditions.
Fundraising Event
Host a charitable event like a group run, a bake sale, or a virtual concert. You can utilize the gathered funds to propel medical research, bring financial aid to the affected families and pour in efforts to boost overall awareness.
7 Interesting Facts About Rare Diseases
A Colorful Condition
Sufferers of an unusual disorder known as Chromhidrosis don't experience sweat in the usual form, but rather in vivid hues like blue, yellow, green, or even black. This odd phenomenon arises from a surplus of lipofuscin, a specific pigment present in abundant amounts in sweat glands.
The Real Story of Werewolves
The origin of folklore like the werewolf could find its roots in a rare condition known as Hypertrichosis. This intriguing disorder leads to an atypical quantity of hair growth all over an individual's body, thus making sufferers appear similar to the mythical creature.
Tree Man Illness
Drawing its nickname from the extraordinary symptoms, tree man syndrome, or Epidermodysplasia verruciformis, is an uncommon skin disorder. Patients develop lesions that closely resemble warts, and often bear a similarity to the bark of a tree.
Involuntary Fainting Episodes
Those who suffer from a disorder known as Neurally Mediated Hypotension experience a sudden loss of consciousness when they've been on their feet for extended periods or exposed to stretched out stress, or even when they see blood.
The Extra Rib
An additional, abnormal rib grows above the first rib in individuals with a rare disorder known as Cervical Rib Syndrome. This extra rib often leads to triggering various neurological and vascular symptoms.
Living With A Rare Aging Syndrome
A singular genetic disorder known as Hutchinson-Gilford Progeria Syndrome dramatically accelerates the aging process in children. This leads to the unusual phenomenon of kids appearing elderly, comparable to people in their 60s or 70s, by the time they reach 10.
The Never-Ending Growth
An incredibly rare condition, Proteus syndrome, causes the bones, skin, and other tissues to continue growing excessively. The disorder is a rarity, with less than 1000 documented cases around the globe. Joseph Merrick, better known as The Elephant Man, was a known sufferer.
Rare Disease Day FAQs
Next Rare Disease Day Dates
| Year | Date | Day |
|---|---|---|
| 2023 | February 29th | Wednesday |
| 2024 | February 29th | Thursday |
| 2025 | February 29th | Saturday |
| 2026 | February 29th | Sunday |
| 2027 | February 29th | Monday |
| What is the pattern? | Every February 29th | |
Rare Disease Day Word Search
- Rare
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- Awareness
- Therapy
- Research
- Treatment