UNIQUE (Rare Chromosome Disorder Support Group)

Fund Unique’s new rare chromosome & gene database for the future

Unique urgently needs to replace our old database to create a new more powerful patient registry to increase our knowledge and understanding of the lifelong impacts on children and adults with rare chromosome & gene disorders and encourage research.
£11,533
raised of £15,000 target
by 100 supporters
Closes on 30/06/2024
RCN 1110661

Story

Please donate to Unique's appeal....

We urgently need a brand-new Unique database to take the charity into the future.

The Unique database contains all the precious information that you and other members have given us about your family’s rare chromosome or gene disorder and how they have been affected. It enabled us to write the existing 300 chromosome disorder guides that have helped so many and to match you with families with similar conditions.

But our existing database is no longer fit for purpose. It’s not capable of managing complicated genetic data, it is slow and it isn’t easy for you to update us about your loved one’s progress.

Our new database will provide you, our members, with real-time access to see your information, give you greater control and enable you to provide regular updates on your medical concerns, your children and adults’ milestones and achievements, as well as the day-to-day realities of your experience of living with a rare chromosome or gene disorder.

The new database, tailored to our needs, will cost £30,000. Help us unlock the mysteries of rare chromosome and gene disorders and create a brighter future for all our families and the many thousands more joining us every year by donating to this appeal.

We are so grateful for any donation you can make.

Thank You,

The Unique Team.

Special Thank you for Donations:

£10: a social media shoutout

£25: a special mention on our wall of honour in the Unique magazine and on our website

£50: a Unique keyring and Champion status on our wall of honour in the Unique magazine and on our website

£100: a Unique t-shirt and a personal thank you card

£500: a thank you phone call from Sarah, CEO, plus Unique t-shirts for all the family (max 5)

£1000: tea and cake with Sarah, CEO and Sophie Sainty, Chair of Unique Trustees, in London (for those not in UK or would prefer, this can be over Zoom)

£2,000: A tour of the Wellcome Sanger Institute, Cambridge with Matt Hurles (Director of the Institute) or one of his team. The Sanger is where much of the Human Genome was first sequenced and to see how genomic sequencing happens now (either in person or over Zoom).

OR

A tour of the Exeter Genomics Laboratory which not only delivers genetics and genomics NHs and research patients, is also the national provider of the pioneering national rapid sequencing service for acutely ill babies.

These tours can be in-person or over Zoom.

About the charity

Unique provides much needed help and information to those caring for a family member with a rare chromosome or single gene disorder. These are lifelong conditions affecting at least 1 in 200 babies, causing disability and medical issues. For more information see www.rarechromo.org

Donation summary

Total raised
£11,532.42
+ £834.00 Gift Aid
Online donations
£11,532.42
Offline donations
£0.00
Direct donations
£11,532.42
Donations via fundraisers
£0.00

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