End of AmazonSmile program impacts non-profits

Last month, Amazon announced it is sunsetting its AmazonSmile program on Monday, February 20, 2023. The program was started in 2013 to benefit non-profits of all sizes by allowing anyone purchasing goods through the Amazon site to allocate a small percentage of each purchase to the non-profit of their choice. For the past decade, these donations have allowed non-profits to add anywhere from a few hundred dollars to thousand dollars to their bottom line, and as anyone in the non-profit industry can tell you, every penny counts.

It’s not just about the dollars and cents to us though. Every time someone that has picked a rare disease non-profit to benefit from AmazonSmile, they are reminded of the impact that they have through their Amazon purchase.

Global Genes and the non-profit organizations that we work with are coming together to ask Amazon to help make larger impact for the rare disease community. We asked non-profits in the rare disease community to sign on to a letter addressed to Amazon CEO, Andy Jassy. 180 non-profit organizations signed our letter, including 91 members of the Global Genes Global Advocacy Alliance.

Dear Mr. Jassy,
For Global Genes and the rare disease organizations we work with, maximizing impact and improving the lives of those often forgotten drives what we do every day. AmazonSmile has been a powerful tool for us to accomplish this.

We aren’t a small group. Rare diseases affect more than 400 million people globally and 1 in 10 Americans – more than cancer & HIV/AIDS combined. There are more than 10,000 rare diseases. There are no FDA-approved treatments for 95 percent of these conditions.

As you look to invest in areas of meaningful change, we want to share some of what the rare community has done with funds from the AmazonSmile program.
• Helped people obtain a diagnosis faster by providing access to genetic testing for underserved populations
• Catalyzed the building of patient communities that connect people around the world
• Covered the cost of medication, travel expenses, necessary medical equipment, and other needs not covered by insurance by providing financial support for families in need
• Equipped individuals to advocate for new legislation to ensure better newborn screening, greater protection for patients, and their families
• Empowered and educated patients and caregivers to become drivers in their own care
• Built or contributed to data collection programs and natural history studies that help researchers find better treatments
• Supported the discovery of new therapies by funding early stage rare disease research

Individuals, industry, organizations, and government are working together to improve the lives of people with rare diseases, but it isn’t enough. Instead of stepping out of this role, we hope Amazon
will lean in and join us to make a larger impact for one of the most driven and underserved groups of people.

We urge you to hear from this community before finalizing what kind of impact you hope to make through your charitable contributions. The rare community has become experts at doing much with little—imagine the impact that could be made in the lives of so many with greater investment from organizations like Amazon.

With Hope,
Global Genes and Members of the RARE Global Advocacy Alliance

Organizations that have signed onto our AmazonSmile letter

If you have donated to Global Genes or any of these organizations through AmazonSmile in the last decade, we thank you profusely for your support of the rare disease community.