8 Organizations For Rare Disease Research To Support On Rare Disease Day 2019
For many of us, rare diseases likely aren't top of mind. However, if you head over to the Rare Disease Day website, you can read countless stories from people living with illnesses most of us have never heard of. Want to help? On Rare Disease Day, Feb. 28, consider making a donation to organizations that support rare disease research. Aside from raising money, raising awareness is key to improving outcomes for those living with rare diseases, which struggle to find research funding compared with their more common counterparts.
One woman named Ann detailed her struggle on the Rare Disease Day website to get a proper diagnosis for subglottic stenosis, a narrowing of the airway below the vocal cords. Like many people who are eventually diagnosed with a rare disease, she noted that she went from doctor to doctor for years before receiving a proper diagnosis.
"I had idiopathic subglottic stenosis — my trachea had grown closed with scar tissue," Ann said. "By the time I had the first surgery, I was 75-percent closed, basically breathing through a soda straw. [...] For those of you with breathing problems, the only way to find this disease is to have someone look down your trachea and see it, there are no other tests. Don't believe them when they say you're just unfit, you aren't, don't give up trying to find out why you can't breath."
Stories like Ann's highlight the need for rare-disease research. If you want to help, here are some organizations to support. You can also watch the documentary short Rare In Common or listen to the podcast to learn more about how rare diseases affect patients and their families.
1. National Organization for Rare Disorders
A disease is defined as rare if it affects less than 200,000 people, according to the Rare Disease Day website. What's more, because there are more than 6,000 rare diseases with symptoms that mimic those of common disorders, receiving a proper diagnosis can take time. "The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients," Rare Disease Day explained on its website.
Places like the National Organization for Rare Disorders, the official U.S. sponsor for Rare Disease Day, advocate for patients and their families. NORD is "committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services." If you want to get involved with NORD, head to their website to donate, volunteer, and more.
2. Rare Disease Day
An easy way to show your support is by becoming a friend of Rare Disease Day by filling out a form on their website. You can upload a photo and write a short paragraph about how you plan to support Rare Disease Day. You can also show your support on social media (this is a great opportunity to use the socials for good instead of evil) with the hashtag #ShowYourRare.
3. Rare Diseases Clinical Research Network
Another way to support rare disease research is by becoming an advocate. The Rare Diseases Clinical Research Network provides information about how to join an advocacy group to provide support for those living with rare diseases and offer education to others about rare diseases. You can even use their online tool to search for a specific rare disease to support.
4. Center for Rare Childhood Disorders
According Rare Disease Day facts, more than 50 percent of rare diseases affect children. If you want to donate money, and you want it to do the most good, the TGen Center for Rare Childhood Disorders is having a donation event called The Dorrance Challenge. Whatever you donate will be matched dollar for dollar to help fund research for rare diseases affecting children.
5. National Disease Research Interchange
6. Ben's Friends Patient Support Communities
Having a rare disease can be isolating, and having a solid support system can make a big difference. Organizations like Ben’s Friends, "ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them." If you want to get involved, you can volunteer your time, make a monetary donation, or even shop their store.
7. Uplifting Athletes
Want to help raise money for rare disease research and get active at the same time? Uplifting Athletes has myriad opportunities to do just that. Head to their website to learn about organizing a race or participating in an existing sports campaign to help raise money and awareness about rare diseases.
8. Support A Disease-Specific Organization
If you have a rare disease, a family member who does, or you just want to support a specific cause, you can search the rare disease database on the Genetic and Rare Diseases Information Center of the National Institutes of Health website. Once you find the rare disease you're looking for, search the internet for groups dedicated to researching that particular disease. Then, donate or volunteer.
While rare diseases can be debilitating, raising awareness and helping to fund research is something everyone can do to advance understanding about, and promote kindness for, people living with rare diseases.