2023 Rare Disease Day

Best Light Up For Rare Disease Day Buildings

Get ready to continue the Global Chain of Lights, share your colors and join everyone in a show of global solidarity for the Rare Disease Day movement…

The 2024 Rare Disease Day lighting chain begin at 7PM (UTC+7) on the 29th February, at the farthest most easterly clock strikes the hour; then participants switched on their lights to join the chain and send it, as well as everyone’s best wishes, spreading across earth. It is a beautiful display the shines light on rare diseases.

Best Light Up For Rare Disease Day Buildings

This global collaborative event takes place every year, in over 100’s countries, and encourages everyone to join or simply observe the stunning lighting displays of the official Rare Disease Day colors; purple, pink, green and blue, that when synchronized to turn on at 7PM (UTC+7), will see the ‘Global Chain of Lights’ crawl along the Earth like a Mexican Wave.

Whilst no doubt mesmerizing from the skies, many of the lighting installations are awe-inspiring themselves, so be sure to check out your local sites and hotspots to find out where you may be able to enjoy a piece of this unique lighting chain join its links first hand.

Some of the best lighting displays that participants got to enjoy from the Light Up For Rare Disease Day campaign:

What is Rare Disease Day?

Rare Disease Day is an event created to raise awareness regarding the 7000+ rare diseases that affect over 300 million annually worldwide. It is observed annually on the last day of February; which is the 28th February 3 out of every 4 years in the solar cycle, but occurs on the 29th once every 4 years on what is known as the famous; leap day, 29th of February.

Choosing this date didn’t happen by accident; it’s simply the most rare day on the calendar and therefore a rather fitting date to observe those living with the rarest diseases.

This previous #RareDiseaseDay was particularly special since it occured on the 29th Feb as 2024—a leap year. Of course it goes without saying that leap year celebrations typically sees lighting creations that overshadows other years, so you can look forward to experiencing a rare disease day that promises to be bigger and better than the last.

Rare Disease Day History

How this unique, global collaboration came to be…

Since it was established in 2008, Rare Disease Day has played a crucial role in bridging any gaps in the medical community to help build a more capable, ‘multi-disease, global, and diverse’ network of participants who all work together to provide better equity for social opportunities, healthcare, as well as diagnostic and treatment/therapies services for those living with a rare disease.

Essentially patient-led, the movement behind the organization includes everyone from the individuals families, caregivers, and healthcare professionals to researchers, clinicians, and industry reps who’re united with the goal of raising awareness and enabling better action for this vulnerable population. Even the general public with no relation to anyone living with, or working with rare diseases, are encouraged to take part, or at least enjoy the spectacle.

How Rare Disease Day Can Improve Treatment for Rare Diseases

Rare Disease Day

Rare diseases often go unnoticed and are frequently misdiagnosed due to their complexity and lack of medical knowledge.

Unfortunately the fewer numbers of people living with rare diseases naturally means they’re rarely on the minds of those who give their time to the medical industry, let alone on the minds of the wider population. Since the 7000 plus rare diseases do not receive as much attention or support as more readily occurring medical problems, fewer treatments, if any, have had chance to be developed, tested, and approved for safe and effective use.

It’s this problem with lack of exposure that the organization hopes to change. By encouraging those familiar in living with rare diseases to lead the charge in a global event that will not only be witnessed by many but can also be joined by them, each #RareDiseaseDay sees a huge spike in interest surrounding these lesser known medical conditions.

The ultimate goal of raising awareness for rare diseases targets several key factors that experts believe will greatly aid the development of treatments for such rare conditions.

According to RareDiseaseDay.org these include:

How to Join the Rare Disease Day Global Event

Although Rare Disease Day may be over, continue the mission. In addition to the wealth of material available to help you join the celebration, you can light up and/or decorate your home. You don’t have to wait until the last day of Feb, which will be the 29th this leap year of 2024.

Downloadable material contains everything from posters you can publish online or print, to social media backgrounds you can use to spruce up your favorite photos to share with your family and friends

Within the various packages you can find:

* Promo graphics  and posters for printing and publishing online
* Sharable Instagram filters to help you get creative
* Social Media Profile frames
* Virtual Background for Zoom, Google Meet and Teams
* Social Media Banners Statistics and Info

Tool kits to help light up numerous types of buildings and places:

* School Toolkit
* Home Illumination Toolkit
* Building Illumination Toolkit
* Equity Toolkit

As well as a bunch more campaign materials such as:

* Info Pack
* Logos
* Webinars
* Style Guide

The illumination tool kits contain great ideas on how to decorate your home, classroom, or any space you’ve been given permission to celebrate in. This includes ideas for both indoor and outdoor installations; but again be sure you’ve obtained official permission before attempting to decorate any shared/public pieces of land or property.

Get creative, you can use any form of lighting from garlands and fairy lights to disco lamps and even simple candles. Remember to handle with care, especially when using candles, old lighting, and cheap imported devices, but have fun, let your imagination take over, and join the millions of others around the world in this unique event.

Be sure you take some photos of your lighting and try to capture as many memorable moments as possible throughout the event; share them online alongside any digital media, promotions, and/or creations, and don’t forget to check out what your family, friends and following posted to show their love for this wonderful event designed at heart to bring people together.

To help your images get noticed by others be sure to use the correct colors, try using the ‘Global Chain of Light Filters’ and don’t forget to add the hashtags #RareDiseaseDay and #LightUpForRare.

Who What Where Rare Disease Day

Who’s taking part, what are they doing, and where can you go to see/join the Rare Disease Day celebrations…

Rare Disease Day essentially occurs worldwide, wherever anyone wishes to participate they can easily join the chain of lights, but those living in Europe, Canada, the United States, and India, as well as a over 106 other countries, will be able to visit local celebrations, and perhaps even visit some of the world famous sites that are also taking part in the event.

A number of non-profit and charitable organizations make arrangements for the celebrations, these include EURORDIS, Genetic Alliance UK, and the Rare Revolution Magazine to name just a few.

This year the National Organization for Rare Disorders (NORD) is working hard to encourage popular buildings, landmarks, and monuments to participate in chain of lights to ensure it’s a big and bright as possible. Not even half way into the year a huge number of places have agreed to show their support, so you can expect to see some of your favorite places shine bright on the night with the #RareDiseaseDay purple, pink, green and blue lights.

Best Light Up For Rare Disease Day Buildings 2024

Just a handful of the world’s most famous landmarks and monuments that are already committed to shining their lights and joining the chain include:

Over 150 landmarks are committed to help Rocket Pharmaceuticals alone, and Rocket are just one of many leaders in the industry heading their own efforts in the campaign.

With many others taking part, in hundreds of other countries across the globe, there’ll be hundreds more places that will shine their lights and so too will join the chain. 

Some other international examples of those who’ve promised to join the global chain of lights include:

  • CN Tower in Toronto, Canada
  • Eiffel Tower in Paris, France
  • Tokyo Tower in Japan
  • Burj Khalifa, a skyscraper in Dubai, United Arab Emirates
  • Hylton Castle in the U.K.
  • Nkrumah Mausoleum in Ghana
  • MetLife Stadium in New Jersey
  • National Institutes of Health Building 1 in Bethesda, Maryland
  • Gov. Mario M. Cuomo Bridge in New York
  • Empire State Building in New York
  • Philadelphia’s Boathouse Row
  • Community Hall in The City of Newberry
  • Terminal Tower in Cleveland, Ohio
  • Veterans Memorial Bridge in Chattanooga TN
  • Zakim Bridge in Boston, MA
  • Lower Free Bridge in Trenton, NJ
  • The National Institute of Health in Washington, D.C.

Other American locations include:

  • The Bank of America Plaza in Dallas, TX
  • The Union Plaza in Little Rock, AR
  • The Capella Tower in Minneapolis, MN
  • The Florida State Capitol’s Old Capitol Steps
  • The Lowry Bridge in Minnesota
  • The Miami Freedom Tower in Miami, FL
  • The Bob Kerry Bridge in Omaha, NE
  • I-35W St. Anthony Falls Bridge in Minneapolis, MN

Even the Archbishop of Pisa Monsignor Giovanni Paolo Benotto and the Opera Primaziale, underline ERN ReCONNET’s and Pisa University Hospital’s, a place known for top class diagnosis and treatment in rare diseases, have all committed to the cause. So you’ll get to see the following light up:

  • Leaning Tower of Pisa in Pisa, Italy
  • The Colosseum in Rome, Italy
  • Pisa University Hospital

What is a Rare Disease?

There is no single, widely accepted definition for rare diseases. Some definitions rely solely on the number of people living with a disease, and other definitions include other factors, such as the existence of adequate treatments or the severity of the disease.

Although there is no single, widely accepted definition for rare diseases, most agree that approx. 7,000 are known to exist, with many more likely yet undocumented.

A reported 30 million people in the U.S. alone are estimated to have a rare disease, a figure that jumps to 300 million worldwide.

In the United States, the Rare Diseases Act of 2002 defines a rare disease as any condition that affects fewer than 200,000 people in the United States, or roughly 1 in 1,500 people, according to the National Library of Medicine

This definition varies from country to country, for example in Japan a rare disease is officially classified as a condition that affects fewer than 50,000 patients, or approx. 1 in 2,500 people, in the country.

Whereas the European Commission on Public Health defines a rare diseases as “life-threatening or chronically debilitating diseases, which are of such low prevalence that special combined efforts are needed to address them.”

And the term low prevalence is later defined as fewer than 1 in 2,000 people.

Of these 7000 known rare diseases, only 5-10% have an FDA-approved treatment. However, some experts estimate that as many as 90-95% of rare diseases are untreatable.

Furthermore, a number of these rare diseases specifically target children, which leads to statistics such as those that state as many as 30% of children with rare diseases will die before reaching their fifth birthdays, partly due to poor diagnosis and partly due to the lack of treatment.  

Of course, stats like these are the most important to change for the better, as the future of the world is literally the future of our children, whichever way you wish to look at it.

Counting Down The Days Until Rare Disease Day

With 321 days to go (as of 13th April) until the 2024 event, you can always be reminded how many days remain by visiting the handy countdown timer on the official homepage.

You can keep track of other key stats, too, such as the following:

* 600+ events worldwide
* 106 countries participating across the globe

Alternatively, you can sign up at the official Rare Disease Day site to automatically receive notifications with any and all updates as soon as they’re announced.

So whether you plan to visit local celebrations, hold your own, or simply observe and share the best of those joining the global chain of light around the world, mark your calendars and get ready to help make this year’s light chain as bigger and better than ever before.

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