About Us
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.
VISION
Advocacy, awareness, research, to find targeted therapies and provide medical care to help those with dup15q syndrome live full and happy lives. Together we believe, together we achieve.
VALUES
The Dup15q Alliance was founded by a group of families and that fact is something that we need to hold at our core in all of our endeavors and vision as this can easily be minimized when scaling an organization. "Does this endeavor improve the lives of patients with dup15q and their families either directly or indirectly?" is at the core of this strategic vision.
Advocacy through awareness, Education and engagement, Research and clinical care and the core values of Dup15q Alliance that help to guide our organization and help us to uphold our Vision and Mission.
Project 8p Foundation is a 501(c)(3) nonprofit organization that is researching 8p disorders to find treatment options and give meaningful answers to those affected and their families. We are patient-led. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.
We are living in the age of scientific discovery. With a strong network of companies and organizations around the world that are partnering together, rare diseases are being diagnoses and therapies are being developed to improve and save lives. While there are many obstacles to overcome, there is astonishing progress with repurposing of existing drugs, new drugs, and cutting-edge gene and cell therapy that is happening at a faster pace than imagined by the scientific and pharmaceutical community.
Project 8p is an active member of this community and aims to help everyone that is impacted by chromosome 8p to achieve their goals on their own unique journey. Project 8p is committed to maximizing every opportunity and resource.
The next time a human being is diagnosed with an 8p condition, our goal is that the doctors, families, educators, and truly anyone has free and easy access to a comprehensive toolkit about the diagnosis and what to expect for the future. If we can alleviate some of the uncertainty, and build on this information, we believe we can achieve treatment remedies for some, if not all, of the symptoms with this diagnosis.
Ring14 USA is a national nonprofit founded in 2011 by five mothers whose children are affected by Ring14 Syndrome, but our organization supports all those affected by rare neurodevelopmental syndromes of the 14th chromosome. Our children and their families face tremendous challenges – they need treatment options, better therapies, support, and hope. With this in mind, we raise funds to promote research, raise awareness, and support families by providing educational resources, facilitating social networks, and hosting family conferences. All research efforts are organized through Ring14 International, our international parent nonprofit that coordinates the shared research objectives of all the national Ring14 chapters. Together, we fund critical research projects, organize scientific workshops, and maintain both a biobank and clinical database to aid our researchers.
OUR VISION
In our effort to improve the quality of life for those affected by the rare neurodevelopmental disorders of the 14th chromosome, such as Ring14 Syndrome, we commit to promoting and funding critical research, raising awareness of these rare disorders, and providing thoughtful support to this community.
OUR MISSION
To create a brighter future for these children by finding targeted treatments and therapies which will enable them to reach their full potential and live their best life. To create a supportive community for the families, so that no one faces these challenges alone.