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With nearly 7,000 rare illnesses in the world today, an illness that only affects 3,000 people per year can often be overlooked.  It is estimated that 25 – 30 million Americans are living with a rare disease today. With these facts and figures in mind, raising funds for rare diseases may seem like a daunting task. However with the right tools, team, and attitude, you’ll find it’s easy to properly host a successful fundraiser.

rare disease fundraising

Rare Disease Fundraising Tactic #1: Social Media

Starting a campaign via social media gives you access to make a difference at your fingertips. In 2014, the amyotrophic lateral sclerosis (ALS) Ice Bucket Challenge sparked millions of people to dump freezing cold ice water over their heads in support of raising both awareness and money.

Participants were challenged to complete the task, nominate friends, upload video proof to Facebook or Instagram and raise awareness! This campaign raised close to 115 million dollars and not a penny was wasted; 67 percent went to research, 20 percent allocated to patient and community services, 9 percent towards education, 2 percent for additional fundraising and another 2 percent for processing fees.

17 Mistakes Fundraisers Can Stop Making Now

Other key tips for leveraging social media for fundraising are:

  • Incorporating a Consistent Hashtag – A hashtag will allow you to track your fundraiser cross country or even across the globe.
  • Crowdfunding – Crowdfunding has the potential to bring a community together. Although people might be raising small amounts individually, the difference can be enormous when all efforts are combined. Crowdfunding has gained immense popularity due to the ease and flexibility. Online resources like GoFundMe and GoGetFunding all have the ability to help with a mission of raising money for an orphan disease. There are a ton of options, so do some research to find out which site is the right one for you and your cause.
  • Awareness Video Sharing – On the last day of February, annually, the entire world recognizes Rare Disease Day. Part of raising awareness and monetary funds is creating a video where you share your story or a story of a loved one. Explaining your personal experience with a rare disease, whatever your part may be, helps remind others they are not alone. It’s a small token of camaraderie, but it can really go a long way.
  • Building Your Campaign Page – This is an important part of a social fundraiser. While it can be a very easy and quick process to get a campaign page up and running online, you should be mindful and tactical during this stage of your planning. If you’re planning on running a 6-month tactic, for example, it is good practice to start planning six months in advance.
  • Using Visuals – In an attempt to grab the attention of others, keeping up to date with infographics, tracking your progress and sharing with visual aids is important. Highlighting the success of campaigns will likely bring in more participants. After all – everyone wants to help and have fun.

Rare Disease Fundraising Tactic #2: Walk/Run

A walk/run is a great way to encourage community members to go outdoors and get active all while making a difference. With increasing use of the internet, virtual run/walks are gaining in popularity, as well. Two years ago, Global Genes paved a new trail by inviting people across the entire world to raise money for unfunded rare diseases with a virtual 5K race.

Virtual races allow for people to participate in any city on any terrain, inside or outside, all while going at their own paces. If budgeted properly, this can be a relatively inexpensive fundraiser. Two ways to make money off of an event like this is to have the runner/walker pay an entry fee or have participants get sponsored by friends and family.

Rare Disease Fundraising Tactic #3: Go Old School

  • Car washes are a classic day-long event that are sure to bring in a large crowd. With a big enough lot or open area, multiple cars can be serviced at once. It’s important to have volunteers eager and ready, but should be easy to compile a team after you explain what a good cause it’s for. Buying easy snacks and bottled drinks will also give you the chance to make some more money while people are waiting for their cars to be shined.
  • Donation jars and flyers! While social media channels have the potential to get the word across the world in 10 seconds, there is nothing wrong with good old-fashioned signs and posters. Ask your HR department or school if you’re allowed to set up a bin that can collect donations from people if they feel so inclined! Next, create colorful signs to advertise what the bin/jars are for and where people can find them to donate. Set a goal figure for the jar and as it reaches milestones, color it in to show the progress you’re making. When it hits your goal, donate that amount and start again.

One voice can do a lot of good. By speaking up and making actionable choices, you can make a difference in the rare disease community. Whether it’s a global campaign created virtually or a small fundraiser for all the members of your office, a little awareness can go along way. Find what works for you and leverage it to make a difference.

Plan A Fundraiser Calendar For Your Nonprofit Step-By-Step

A disease is considered rare if it affects 200,000 people or less at one time. There are countless of these diseases out there, and some remain exclusive to specific age groups. The diseases below are only a few examples of how different age groups may be impacted by an orphan disease:

Children (Age 5-10): Batten Disease. This illness affects young girls and boys, primarily between the ages of 5 to ten years old. A rare and fatal disease that aggressively attacks the nervous system causing blindness, recurring seizures, cognitive decline, personality changes, behavioral changes and more, Batten disease affects 2-4 births out of every 100,000 in the United States. In good news, according to the Batten Disease Support and Research Association, numbers are at an all-time low.

Young Adults (Age 16-25): Becker Muscular Dystrophy (MD). Although muscular dystrophy refers to nearly 30 different types of inherited diseases, Becker more commonly develops in young adults 16 to 25 years of age. Symptoms appear gradually and only affect males, though women can be carriers. 1 in 30,000 young men will develop Becker MD. Most patients with BMD can carry out a fair quality of life well into their middle to late adulthood.

Senior Citizens (Age 65+): Mesothelioma. A cancer that is predominantly found in the 65 and older demographic, mesothelioma affects the lining of major organs such as the lungs, abdomen area, and in some cases, the heart cavity. Historically, mesothelioma has been nicknamed the “old man cancer” due to the nature of development. This disease is found mainly in men who have worked in construction jobs or around asbestos sites. Others commonly impacted include military veterans, particularly those who serves on Naval ships.



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