THE GLOBAL ANGELMAN REGISTRY
The Global Angelman Syndrome Registry is the first online Patient Driven registry for Angelman Syndrome; putting power in the hands of those who care for someone with the Syndrome.
Parents and caregivers are driving the collection of data by volunteering information about their child or adult with Angelman Syndrome that is rapidly becoming the largest collection of information on Angelman Syndrome to date.
The Registry will provide a tool for understanding developmental progress, medication and seizure management. More importantly, it will provide an invaluable resource to advance the search for therapeutics.
The timing is perfect; with pharmaceutical companies anticipating drug trials to treat the syndrome, the Registry provides the perfect mechanism to analyse, recruit and measure effectiveness of treatments. Share your story in the Global Angelman Syndrome Registry!
To find out more:
Further information: http://cureangelman.org.au/AngelmanRegistry/
Joining the registry: https://angelmanregistry.info/
Contact the data curator: firstname.lastname@example.org
Visit us on Facebook: https://www.facebook.com/angelmanregistry.info/
Angelman Biomarkers and Outcome Measures Alliance (the A-BOM)
The Angelman Biomarkers and Outcome Measures Alliance (the A-BOM) is an alliance formed by both the Foundation for Angelman Syndrome Therapeutics and the Angelman Syndrome Foundation, together with researchers and pharmaceutical corporations to help move new treatments to the clinical trial phase. There are many medications and treatments for Angelman syndrome that are coming close to being ready for clinical trials. We need rigorous ways to measure if these treatments improve the quality of life for patients and families. Our alliance members work together to share in data, research, trial design, and stories to help people with Angelman syndrome.
Angelman syndrome was first described exactly 50 years ago in December 1965 by Dr Harry Angelman. Dr Angelman’s thoughts and observations on the syndrome-type symptoms of this condition were consolidated after viewing “Portrait of a boy holding a child’s drawing” by Caroto. This painting has significant sentimental and historical value to the Angelman syndrome community around the word.
On 19 November 2015, 17 artworks were stolen from the Museo Civico di Castelvecchio, in Verona, Italy. The haul included six works by Tintoretto, pieces by Rubens, Jacopo Mantegna, Jacopo Bellini and Hans de Jode as well as a work well known to the international Angelman community: “Portrait of a boy holding a child’s drawing” by Caroto. The critic and curator Vittorio Sgarbi described this as “one of the most significant art thefts ever to happen in Italy”. All the stolen artworks were eventually recovered in March 2016. The authorities made 12 arrests in connection to the heist. Most of the suspects were from Moldova, and the paintings were recovered just one mile from the shared border, hidden in plastic bags.