A Global Statement of Unity and Common Purpose and Values for Organizations serving individuals with Chromosome 15q11-13 Duplication Syndrome including other variances within this region.
We, the undersigned, stand together and unite our voices to raise public awareness about the chromosome disorder that our children and family members suffer from, and further recognize that the road leading us to effective treatments and cures for our loved ones is best serve by aligning our efforts in the activities that stand to derive the most benefit for those affected:
A unified scientific knowledge base in which all international groups engage, support and participate regardless of level of support or ability to fund research projects.
The development of a common standard for medical clinics in support of diagnosis and treatment of any and all conditions underlying the Chromosome 15q11-13 Duplication Syndrome including but not limited to epilepsy, GI, etc.
The development of a global network of resources in support of education, social and interactive needs of affected Chromosome 15q11-13 families.
The development of a global network of resources in support of the social and interactive needs of affected families in all countries by promoting family connections across the borders that are affected by any chromosome 15q disorder.
Who we are
We are families with members who suffer from a rare genetic disorder involving alterations in chromosome 15q11-13. As we advocate on behalf of our affected family members, we further our global goals by acting in our local communities and nations in accordance to our common values as stated above.
Where we are located
How we are organized
We are groups originally created in Western Hemisphere countries (in North America and Europe primarily) but with a goal of increasing our reach worldwide. Our groups are typically structured as non-profit organizations.
Each group or organization in each individual country will out its local charter as determined by their memberhips/subject to their local laws and regulations, yet strive to act globally in accordance to the principals of unity as stated above.
As examples of the global reach
a) Support of research projects of Chromosome15q11-13 Duplication Syndrome in alliance with one or more individual groups.
b) Developing clinics for Chromosome15q11-13 Duplication Syndrome and sharing information between countries on best practices
c) Support of Chromosome 15q11-13 awareness and advocacy globally.
Dup15q Alliance is pleased to help European families find language and country specific resources.
Dup15q Alliance sont plu d’aider des familles européennes trouvent la langue et le pays ressources spécifiques.
Dup15q Alliance werden erfreut, europäischen Familien zu helfen, Sprache zu finden, und Land spezifische Ressourcen.
Dup15q Alliance è lieta di aiutare le famiglie europee a trovare informazoni nella loro lingua e risorse specifiche per il loro paese.
Dup15q Australia Ltd is an authorised charity governed by the Australian Charity & Not-for-Profits Commission (ACNC). Formed in 2016. For more information visit: https://www.dup15qaustralia.org.au/
l contatto per famiglie italiane: “nonsolo15” associazione per la ricerca e il sostegno di familiari e amici di persone affette da sindrome invdup15 (idic15) onlus.
informazioni da scaricare: unique: “idic(15)” “Vivere con bambini affetti da idic 15”
United Kingdom / International Support
UNIQUE provides support to families affected by chromosome 15q duplications and other rare chromosome disorders in the U.K. and around the world.