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uniquecharity.bsky.social
Unique
@uniquecharity.bsky.social
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. http://rarechromo.org
What changes in your country would you like to see to support the financial pressures of people living with rare chromosome and gene disorders? Share your challenges and ideas below 💬
7/7
December 3, 2025 at 4:12 PM
"Unfortunately, we live in a society where ignorance and lack of support have closed many doors. Job opportunities and financial aid are scarce, but we move forward with hope and determination".
William, 4q35.2 deletion and 15q25.2q26.3 duplication, Colombia (Pg 116-117 of LRB)
6/7
December 3, 2025 at 4:12 PM
"We do not know what will become of him in the not-so-distant future... We are looking into assisted living homes, but there are not many in the country, nor the necessary financial support for them".
- Diego, Balanced translocation, Argentina (Pg 182-185 of LRB)
5/7
December 3, 2025 at 4:12 PM
"Taking care of him has been a challenge. Not being able to work to be financially solvent and feel productive has frustrated me as a woman, even so, my priority is to take care of my son, who depends 100 percent on our care".
- Samuel, 22q13 duplication, Colombia (Pg 152-153 of LRB)
4/7
December 3, 2025 at 4:12 PM
In our recent, Little Red Book, there are different examples of some of the financial challenges that our community face surrounding life with a rare chromosome and gene disorder. Here are just a few:
3/7
December 3, 2025 at 4:12 PM
Our community deal with so many challenges, financial insecurity, financial pressures and worry about financing healthcare shouldn't be one on the list.

Sadly, we constantly hear from our community that this is not the case.
2/7
December 3, 2025 at 4:11 PM
Oh... and I'm sure Sarah wants to make sure you know that the candles were put on the wrong way on her birthday cake! 🤔

THANKS FOR EVERYTHING SARAH!
3/3
December 1, 2025 at 1:55 PM
Sarah works so hard, going above and beyond to help families living with rare chromosome and gene disorders around the world. The Unique team wants to thank her for everything and wishes her a huge, happy birthday!
2/3
December 1, 2025 at 1:55 PM