“I think that the rare disease... community is a special place because there is so much collaboration that happens. There's so much hope for the future and there's such a need that needs to be filled.”

- Hannah Dolhai, advocacy and programs associate at the Cystic Fibrosis Research Institute (CFRI)

“Rare” diseases are those that impact fewer than 200,000 people in the United States. Yet 10,000 rare diseases in the US alone, many of which are life-threatening, affect over 25 million people per year. Roughly half of these individuals are children.

But 25 million lives annually hanging in the balance is not incentivizing enough for companies and organizations to conduct lifesaving research. There are not enough candidates for testing, and often, even if treatments exist, they will be discontinued since there are very few people who take advantage of them. Society is giving up on millions of lives, simply because it’s not lucrative enough.

The beacon of hope for this situation is rare disease nonprofits and the work that they do. Three such examples are the Cystic Fibrosis Research Institute (CFRI), the Sickle-Cell Disease Foundation (SCDF), and the ALS Association. CFRI combats cystic fibrosis, a rare condition that fills and blocks up major organ systems (such as the lungs, pancreas, and liver) with a thick, sticky mucus. Meanwhile, SCDF acts against sickle-cell disease, due to which red blood cells become C-shaped and blood flow is hindered — leading to acute pain and damage to bodily tissue. Finally, the ALS Association serves those with amyotrophic lateral sclerosis, a neurodegenerative disease that strips people of control over basic functions such as motion and speech.

These conditions are all incredibly severe, but all three organizations above are doing incredible work to change the situation for those impacted. They help fund life-extending research initiatives. They improve quality of life for those nearing the end. They offer psychological support for those attempting to cope with their condition. They run education programs for patients and medical professionals. They advocate for legislation that uplifts their communities. They bridge the gaps created by racism, financial barriers, access to quality healthcare, urban-rural dichotomies, and more — so that everyone has equal opportunity to make the best of their situation. They work tirelessly to improve the dire situation — while many of us can’t even pronounce the names of the diseases they are acting against. And they all utilize the donations of ordinary people like you or I.

If you believe in what these organizations stand for, make a donation today. All funds collected will be distributed evenly between CFRI, SCDF, and the ALS Association. Donate to be part of the effort to extend lives, to improve lives, and to equalize lives.