How online education can help children with rare diseases

E-learning in rare diseases
Journalist Jennifer Poll brings an interesting issue for many parents with children affected by a rare or chronic disease: online education, also known as e-learning.

The number of European Union citizens living with rare diseases is estimated to be around 30 millionaccording to Eurordis Rare Diseases Europe. In fact, 1 in 17 people will be affected by a rare illness during their lives, and of the 80 % of genetic diseases, 7 in 10 of them begin in childhood. For these children and their families, life as they know it can look drastically different. Aside from the physical and mental impacts for children living with a rare disease, the lives of their parents are also impacted. However, there is another important part of their lives that can be affected: their education. Children with chronic illnesses often find it difficult to attend schools, and more often than not, they end up being excluded or opting to homeschool. This is where online learning comes in. E-learning in Europe is set to surpass US$36.25 billion by 2023. With the flexibility and improved accessibility it can provide, online learning may be the answer to staying on track educationally for children living with rare diseases and their parents.

Children can continue to earn a world class education structured around their medical needs

Children with rare disease can spend a prolonged period in hospital or outpatient therapy. This period can be even longer if your child has a one of a kind diagnosis where cures and treatment options are still being researched. The physical impacts of certain rare diseases can make attending school in person difficult for both the child and their parents. For instance, some of the effects of some neuromuscular disorders may include muscle weakness, development delays, and secondary conditions like respiratory difficulties.


This often means the children miss school days and, in some cases, are unable to fulfill significant learning outcomes in their curriculum, such as course credits required by most colleges. However, online learning enables children to continue their medical and therapy needs while still meeting their educational milestones. Many college guides also point out that online learning course credits are easily transferable and even offer options for accelerated degree programs. 

Improved accessibility means a higher standard education is open to every child regardless of their illness

This also introduces another vital issue: accessibility of education for all children. While some rare diseases may prevent or limit their ability to engage in full-time education, this does not erase their ability or desire to learn. Online learning ensures all children can attain at least a primary knowledge and gives them a higher chance of fulfilling their career dreams

Online learning has also been shown to increase a child’s confidence and foster their independence skills, both of which are important for later in life. Children with rare illnesses also worry about being bullied in the classroom, according to Global Genes. As a result, they may feel uncomfortable and hesitant to truly engage in the school. However, with online learning, they can feel more comfortable asking questions, and children can focus better while in class

Online education is not just for the children — It provides an education pathway for parents of children with rare diseases too

Many parents or family members often find themselves having to quit or reduce their work hours to care for their children who are living with a rare disease. Whether it is round the clock care, mental support, or chauffeur duties to various medical appointments, it can be a time-consuming role. This often leaves very little time for parents to pursue educational and professional development themselves. However, the same benefits of online learning can also help parents achieve their educational goals and further their professional careers, all while being there for their child. By being flexible enough to allow parents to fit classes into their home routine and at their own speed, parents can set a great example to their child and develop their education as well.

Lastly, online education can work out dramatically cheaper than a traditional school set up. Living with a rare disease often comes with hidden costs, including higher prescription price tags, the fee of necessary home modifications, and specialist equipment along with the loss of income from a parent/carer having to cut back on their work hours. With these families already living with an increased financial burden, the minimal (or in some cases, free) cost of educating a child online may be a welcome addition to their household budget. The Internet is now filled with cost-effective and free learning tools and tips for childhood learning online, helping both parents and their children stay on track. 

Education should be available to every child and parent regardless of their circumstances or what their daily lives look like. With the introduction of online learning, it is one step close to being achieved.


— Jennifer Poll is an American journalist.

Disease management