Contact: Amanda Moore, Angelman Syndrome Foundation or Rachel Martin, Angelman UK
Date: 21st September 2022
AngelmanUK and the Angelman Syndrome Foundation (ASF) partner to launch
new clinics for families in the UK
The Angelman Syndrome Foundation is proud to announce their partnerships with AngelmanUK to launch new clinics and expand existing clinics to better serve the community in the UK
“AngelmanUK is delighted to collaborate with the Angelman Syndrome Foundation (ASF) on this vitally important and exciting project. With the support of the ASF we are able to expand the current NHS Angelman clinic in Manchester as well as create new clinics elsewhere in the UK. We are always looking for ways to better support our families as well as our clinicians, and we know that by working in partnership with the ASF and by joining the LADDER Learning Network we will be able to do this for many years to come.” Rachel Martin, AngelmanUK
“We are so honored to be partnering with such a strong organization like AngelmanUK to bring more clinics to the community and into the LADDER Learning Network. AngelmanUK has been supporting their community with clinics for years, but is excited to now support them to expand and bring on more sites. ” Amanda Moore, CEO of the Angelman Syndrome Foundation
ABOUT LADDER Learning Network
The purpose of the LADDER Learning Network is:
- Connecting families with experienced, highly specialized medical providers, through its ASF Clinics and Dup15q Clinics. Providers within the clinics have experience and expertise in treating these two rare disorders, which has historically been difficult for families to find.
- Connecting medical providers with one another, through monthly video calls, so they can share information about their most challenging cases.
- Connecting the industry with much needed locations to host clinical trials, with the benefits of having patients in place when they become available.
- Maintaining the LADDER Database, its global network of patient data, to ease the burden of paperwork on families.
ABOUT ANGELMAN SYNDROME
Angelman Syndrome is a rare neuro-genetic disorder that occurs in one in 15,000 live births (or 500,000 people worldwide). Common signs and symptoms, such as walking and balance disorders, gastrointestinal issues, seizures and speech impairments, usually appear in early childhood. It is caused by a loss of function of the UBE3A gene in the 15th chromosome derived from the mother. It shares symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi Syndrome. It has no cure.
AngelmanUK is a volunteer-led registered charity based in the UK. Currently they have no paid staff and are run by a dedicated team of trustees who are all parents or siblings of someone with Angelman Syndrome. They help support people with AS and their families as well as carers of people with Angelman Syndrome. They aim to educate and raise awareness of this rare neurological condition and the issues that surround it. They also assist many organizations and individuals in carrying out research into Angelman Syndrome and its many related areas. Much of this research has already provided great benefit to families and carers around the world. They are one of the founder members of the international Angelman Syndrome Alliance – a cross border research initiative that is allowing smaller groups to pool resources for the benefit of all. To find out more, visit angelmanuk.org
ABOUT ANGELMAN SYNDROME FOUNDATION
The mission of Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman Syndrome through education and information, research, and support for individuals with Angelman Syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure. To learn more, visit Angelman.org