Fundraising Strategy Helps Beat Rare Diseases

Online crowdfunding platforms are quite helpful for raising funds for medical treatment of rare diseases. As medical expenses for treating rare diseases can be quite high, many people prefer to go through fundraising platforms to raise funds for medical treatment. Fundraising also helps in collecting money for medical research on rare diseases.

Rare diseases affect a significant portion of the world’s population. These diseases do not receive much financial support. There are several organizations around the world that conduct studies to better diagnose, treat and suggest remedies to people suffering from rare diseases.

EURORDIS or the European Organization for Rare Diseases has estimated that there are 5,000 to 7,000 types of rare diseases in the world (almost 6% to 8% of the current population). Of this, only 400 diseases have related medicines. The Rare Genomics Institute has conducted a study and found that 80% of rare diseases are genetically related; thus, they are present throughout a person's life. Most genetically related diseases show late symptoms or are asymptomatically present in a person’s body, due to which diagnosis gets delayed.

Many rare diseases appear early in life, and about 30% of the patients with these issues die before their 5th birthday. Countries like India, Canada, and the United States celebrate the last day of February as the Rare Disease Day to spread awareness. Examples of rarest diseases include Water Allergy, Porphyria, Pica, Alice in Wonderland Syndrome, Laughing Death, Foreign Accent Syndrome, Fibrodysplasia Ossificans Progressive, Thyroid Cancer and Head and Neck Cancer.

Fundraising for medical expenses of such illnesses helps in further studying these diseases and providing treatment to patients suffering from them. In this article, we have put together a few strategies for fundraising for rare diseases.

Associate with well-known organizations One of the easiest ways to raise funds for medical treatment is to find a trustworthy organization. The European Organization for Rare Diseases (EURODIS) is the main sponsor for international Rare Disease Day; this organization contributes most of its funds to the welfare of people suffering from rare diseases. There are a few organizations in India like the Indian Organization for Rare Diseases, National Organization for Rare Disorder (NORD) and Ketto.

• Ads - Organizations can spread awareness through ads on social media platforms so that more and more people can be aware of such diseases. The major point to consider is the transparency of the work, letting people know how and where the currency is being used. By knowing this, more people will be interested in raising funds for medical treatment for such rare diseases.

• Calendars - In this busy world, many can forget about the funding, and hence, Google calendars or iPhone calendars can be used as a friendly reminder to funders. Making these calendars in a fun and informative way or on specific awareness days is a good way to let people know about the necessity of their contribution to fundraising for medical expenses.

• Thank-you cards/messages – What's better than handwritten or printed cards with donor names mentioned on them? Letting the donors know how helpful they have been to the organization/campaign can motivate them to be a contributor to a good cause in the future as well.

There are a few such organizations, one of which is Ketto. It is an organization in India that helps in crowdfunding and acts as an online crowdfunding platform. You can check out Ketto.

Using social media platforms

Missing out on social media can be a major drawback as millions of people are active there. Social media is a huge platform to get millions of audiences in one place. Educating people about rare diseases or spreading awareness on social media is the quickest and easiest way.

• Own page for the cause – Creating a page about rare diseases and letting people know how these diseases are affecting people can be very useful. Using diagrams and flowcharts to explain the severity can educate the audience about the diseases. Once the page provides the information, then this platform can be used to raise funds through online transactions, educating the audience about rare diseases at the same time.

• Twitter talks – Twitter can be a great way to communicate with an audience. Through tweets, we can answer questions from the audience and others can also be benefited by reading those. Conducting an event on Twitter with any doctor or scientist to spread awareness is a great initiative. On Twitter chat, an event can be organized by setting up a specific date, time, topic, and speaker; it can be easily promoted among the audience as well. Tweet chats can help improve connections within the non-profit space and build your audience.

• Trending hashtags – Making a topic trend through hashtags (such as #raredisease) on Facebook or Instagram can grab more attention from the audience. If donors feel that the organization is genuine, then they will spread the message. If patients are comfortable, they too can help by posting about their medical situations.

• Support from influencers – Collaborating with content creators or influencers with a decent following on social media platforms or asking them for help can be useful, as they already have followers. Finding the right influencer or partner adds a greater advantage on social media platforms.

• Share your story – People are interested in talks that inspire and motivate them. People who are suffering from rare diseases can be encouraged to speak for themselves or to share their stories or about their family members. This will help people understand the problems these patients face. This method of crowdfunding is more meaningful when compared to others.

Celebrate international and national awareness days

There are a bunch of awareness days that are celebrated every year. Take, for example, World Diabetes Day on 14th November, World AIDS Day on 1st December, Rare Disease Day on the last day of February. These international days provide an opportunity to spread awareness and improve the overall medical representation and fundraising for medical expenses for such diseases.

• Campaigns – Hosting campaigns in populated areas, busy streets, big communities offline can help gain more attention to a cause. Organizations can carry out campaigns and raise funds on the spot if people are interested. An example of such a campaign is the 'No Make-up selfie for cancer awareness' challenge where people posted selfies of themselves to raise awareness and funds for cancer patients, within 24 hours over $1 million were raised for the organization. This challenge was started by Fiona Cunningham in 2014. Another such example is the Cancer Research UK - Smart bench campaign, where they offered free Wi-Fi for donations in London for cancer patients and raised funds in 2017.

• Marathon/runs/walks – Getting a group of people together at a spot wearing the same T-shirts or bands and organizing marathons, runs or walks can help raise funds.

• Getting attention from a celebrity – This is an old but golden formula for raising funds for a cause. If a celeb gives a speech about a particular topic, most of their fans will trust them and listen to them; thus the message would be spread effortlessly. If your goal is to spread awareness locally, ask for the help of the local government, party leaders or community leaders for such campaigns.

Host virtual events As the saying goes, modern problems need modern solutions. Hosting an event through digital platforms can be helpful - it can help people understand the importance of donating to a good cause. Make sure that you send the messages regarding event date, topic and the details of the speaker, to donors. You can also use online platforms, media channels to share visuals of the event. Use a hashtag to get attention. For example, NORD launched a virtual campaign asking their donors and their friends, family members or colleagues to walk, run, or bike for 7,000 miles collectively. These funds from the campaign were used for research, patient assistance, and advocacy.

Through fundraising, we can save lives. As rare diseases get less attention from people (as they are less common), effective fundraising strategies can be used to spread awareness and raise funds for medical treatment. If you want to help such people to get proper treatment, you can go for the Ketto organization to raise funds. Click here for more details.

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