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Rare Genomics Institute

Rare Genomics Newsletter, December 2025

A boy wearing a cape and a blue mask overlaid with circles in RG's colors—image links to the Rare Genomics website.

Greetings from Rare Genomics Institute!

Dear friends and supporters,

As 2025 draws to a close, we’re filled with gratitude for everything we've achieved — thanks to your compassion, your time, and your generosity. This year, we made real progress for rare-disease families. But there’s more to be done. With your help now, we can build an even brighter future.

Giving Tuesday Logo with image of a kid and an adult's hands holding a purple flower

2025 Giving Tuesday

Many hands make a big difference. As a small, volunteer-driven organization, every contribution counts.

 Donate Now 

Why give today? Your support funds genetic testing, patient advocacy, and community outreach. Even a modest gift goes a long way.

  • $10 covers a patient’s monthly fee

  • $100 covers sequencing for one set of genes

  • $1000 covers a part of genome sequencing

 

Put Your Rare Disease Knowledge to the Test❓

Feeling curious? Try our short quiz to test your knowledge of rare diseases — share it with friends to see how they do and help raise awareness.

1. Any disease affecting fewer than _____ in the United States is considered rare.

a. 1,000

b. 50,000

c. 200,000

d. 500,000

2. Which of the following is true?

a. Rare diseases are always genetic

b. Rare Disease Day is an international holiday celebrated on the last day of March

c. Rare diseases affect almost 500 million people worldwide

d. All pediatric cancers are considered rare

3.  Approximately how many total patients have been helped through Rare Genomics's Patient Research Services (RGPRS)?

a. 250

b. 410

c. 600

d. 850

Scroll to the end to see the answers. Want to learn more about rare diseases? Click here for more facts about rare diseases!

 

What’s New: The Latest News & Blogs

Here are our newest stories and updates — each one shows real impact, and your clicks help spread the word.

Typewriter with a paper saying 'Personalized Medicine'

Nov 14

Redefining the future of Rare Diseases: The Power of Gene Therapy

Approximately 7,000 rare diseases are known today, and about 80% of them have a genetic basis. For many, there are no approved treatments. Gene therapy provides a personalized approach by addressing the underlying mutation.

Read More

Someone wearing lab gloves working with metal capsules

Oct 23

The Future of Rare Disease Research

Rare diseases, affecting over 400 million worldwide or about 1 in 17 people, have been neglected due to small patient groups and fragmented research. However, new technologies and global teamwork now offer a brighter future for diagnosis and treatment.

Read More

Dollar bills with a surgical mask, gloves and medicines

Sep 15

Economics and Politics in Rare Disease Treatments: The Rising Cost and Challenges

Orphan drug approvals are rising, offering hope for rare disease patients — but at an average cost of $370,000 per year. With policy shifts, Medicare loopholes, and falling research funding, the future of rare disease treatment hangs in the balance.

Read More

 

We’d love to hear from you!

Your experience matters. As we grow, we want to make our website as helpful and user-friendly as possible.

Please take a few minutes to share your thoughts:

 Take Our Survey 
 

Stay tuned for more! Together, we’ve come far, and together we’ll go further.

Thank you for being part of our community.

With gratitude,

The Team at Rare Genomics Institute

 

Trivia Answer Key: 

1. c ; 2. d* ; 3. c

*Explanation for 2: A) Many rare diseases are genetic, but others can be caused by infections, environmental factors, or a combination of causes. B) Rare Disease Day is celebrated on the last day of February. C) Rare diseases affect 350 million people worldwide. D) Correct

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