Rare Chromosome Disorder Awareness Day

Rare Chromosome Disorder Awareness Day

Rare Chromosome and Gene Disorder Awareness Day (‘Rarechromoday’) takes place on June 22nd each year. It’s a day to celebrate, inform and raise awareness about rare chromosome disorders. It also highlights the daily challenges faced by those affected and their families. The awareness color that supports this day, and Unique, is yellow and blue. Wear that you care! Wear an awareness pin or wristband that supports Rare Chromosome and Gene Disorder Awareness Day. The zebra awareness ribbon pin can also be used for this day. The zebra pin represents rare diseases. You will see these two symbols intertwined.

History of Unique

Unique supports, informs and networks with families and individuals affected by a rare chromosome disorder. It was founded by Edna Knight MBE in the UK in 1984 as the Trisomy 9 Support Group.

In 1993 the group was granted Charity Status and the logo Unique was adopted.

As of 1996, Unique launched its comprehensive computerized database. This database collects information on how specific rare chromosome disorders affect the health, development and daily living of individual members. The database also records this information over a lifetime.

In April 1999, the group’s first website was launched and membership stood at just 1192 families.

Short-Term Grants Followed

In 2003, other short-term grants allowed the group to employ a full-time Information Officer to research and produce family-friendly information guides on specific rare chromosome disorders. At the same time, a part-time Assistant Information Officer was employed to produce information on topics such as behavior, communication and education. A part-time Finance and Fundraising Officer joined in 2004.

By 2018, group membership rose to over 16,500 families. This included over 18,500 individuals with a rare chromosome disorder or an autosomal dominant single gene disorder. Membership took place in over 100 countries worldwide. With about 130 to 150 new families joining each month, the rate of growth of membership showed no signs of slowing down! As more sophisticated methods of analyzing people’s chromosomes and DNA became more readily available, like microarrays and DNA sequencing, many more previously undiagnosed people received a diagnosis of a rare chromosome disorder or an autosomal dominant single gene disorder. Consequently, membership continues to rise rapidly for the foreseeable future.

Over these many years, Unique has worked very hard to raise awareness of Unique among families and individuals affected by rare chromosome disorders or autosomal dominant single gene disorders. They have also been spreading awareness of rare chromosome disorders and autosomal dominant single gene disorders to professionals, to decision-makers and policy-makers and to the general public so that they too have an appreciation of the extraordinary challenges that members face.

Unique Awareness

Over many years, Unique has worked to raise awareness among families and individuals affected by rare chromosome disorders or autosomal dominant single gene disorders. Unique has also been spreading awareness of rare chromosome disorders and autosomal dominant single gene disorders. Unique spreads awareness to professionals, decision-makers and policy-makers. They are also educating the general public so that they too have an appreciation of the extraordinary challenges members face.

Unique provides specialist information relating to many hundreds of different rare chromosome disorders and autosomal single gene disorders. Their mission is to inform parents, carers and the professionals working with them. In addition, they  facilitate a network of families across the world living with rare chromosome disorders or autosomal dominant single gene disorders. They bring them together both in person and virtually for invaluable mutual support. By networking with professionals and the wider public they also increase awareness and understanding of what it’s like to live with these disorders.