CDO Summer 2019 Newsletter – Rare Chromosome Disorder Support Network.
CDO was recently contacted by the Chan Zuckerberg Initiative which among other programs has created the Rare As One Project. This project partners with the rare disease community to lift up patient-led research and provide support in the form of tools, grants, training and capacity building. Unfortunately as CDO does not have a staff scientist at this time we were not eligible to apply for this project. But that does not mean we cannot reach out to the Rare as One Project coordinators and let them know more about what we do and hope to accomplish in the years ahead. Just in the last 12 years we have registered more than 7000 individuals and families from 75 countries.
New cytogenetic techniques are now allowing for the recognition of previously undetected anomalies which further ensures our membership will continue to grow. Although CDO is not directly involved in any research for chromosome or gene mutation disorders, we are willing to collaborate with researchers on their chromosome disorder studies and any clinical manifestations. Members and their families benefit too – as any new treatment information is learned, that knowledge is passed along.
Additionally CDO has a library which includes at least 7,500 publications on different forms of chromosomal pathology. And new information is received weekly. Remember, information packets are available to all members. CDO also condenses and publishes important new research data on our website monthly. As time goes by, we continue to learn more and more about these rare disorders.
Thank you all for your continued support of CDO and rare disorder research.
Best wishes, Linda Sorg
And a huge thank you too to Dr. Iosif Lurie for his expertise and knowledge of chromosome disorder pathology – the information he has provided to our members over the years has been invaluable.