Have you ever heard of Giving Tuesday? I hadn’t either until this year. It’s a day devoted to giving to charities, which is something we should all think about. Of course, there are literally thousands of charities out there that are worthy of your support, but I’d like to give you five reasons to consider CheckOrphan.
1. Rare diseases aren’t that rare.
Of course, every rare disease is rare, otherwise, it wouldn’t be on the list of rare diseases, but there are literally thousands of rare diseases — more than 7,000 rare diseases. That means that while you have a terribly small chance of having any one of these diseases when you add them all up, there may be 30 million people in Europe alone, who suffer from one of these diseases.
2. You or someone in your family probably has a rare or orphan disease.
Giving to an organization which can help your family probably seems a little less than altruistic, but you’re not only helping your family, you’re helping everyone else who suffers from one of these orphaned diseases. For instance, I have three friends with children who suffer from mitochondrial diseases. One child has normal brain function but is fed through a tube, the second has physical and mental limitations but can walk and talk and learn, and the third will never progress beyond the mental capabilities of an infant. Scroll through the list of diseases—you might be surprised what you see.
3. Orphan diseases affect us in many ways.
When there are only a few people with any given rare disease, doctors aren’t great at identifying, diagnosing, and treating the disease. There isn’t the research to back it up and no pharmaceutical sales rep is knocking at their door, begging to share the latest treatment. Which means that if you have one of these diseases, the trips to doctors can be endless—trying to figure out what can possibly be done. One friend, who suffers from a rare autoimmune disorder, has a doctor who is more than willing to help, but limited in what he can do. It affects the amount of time she has to take off work. It affects how she can parent her children. It affects every aspect of her life—which means it affects her whole community. A solution would make many people’s lives easier.
4. Drug development is expensive.
People love to bash pharma for the amount of money they spend on marketing, but there are real costs in research and development. If a company can’t make back that investment, they aren’t as motivated to work on a treatment for that particular disease. That’s how diseases end up orphaned—there’s nobody really focusing on it and developing treatment options. CheckOrphan brings attention to these orphan diseases and hope to the rare disease community. That’s worth it.
5. People need support.
There won’t be magical cures overnight, but there can be hope. When research into rare diseases has funding, the victims of these diseases are given hope that there might one day be a cure. We should never underestimate the value of hope. Additionally, CheckOrphan can help people connect with others who are going through the same problems. That not only helps people emotionally—it can actually help them cope with the disease. If a person from Switzerland and a person from Australia with the same rare disease communicate with one another, they can also share how their doctors are treating them and their particular symptoms. Additionally, if the Swiss patient learns of new clinical trials with improved medication, they can share their information with their Australian counterpart, who can then try and find out if a similar trial exists in their country. Not all doctors are aware of every new or ongoing clinical trial and what hospitals are a part of it.
On Giving Tuesday, take the time to think about sharing a bit of your wealth with those who are helping out so many people with so many different problems. You’ll find it worth it.
Photo credit: Wikimedia Commons. Barbara McClintock (1902-1992), Department of Genetics, Carnegie Institution at Cold Spring Harbor, New York, shown in her laboratory.