Rare Disease Patient Advocacy Webinar on SYNGAP1 hosted by Mapi

News provided by

Jul 10, 2017, 09:25 ET

LONDON, July 10, 2017 /PRNewswire/ -- Mapi is scheduled to host a webinar with Monica Weldon, President/CEO Of Bridge the Gap – SYNGAP Education and Research Foundation and Dr. Jimmy Holder; Pediatric Research Neurologist BCM/Texas Chidren's, Director, Medical Advisory Board Bridge the Gap – SYNGAP ERF, a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. The July 12 webinar is to help raise the awareness of the largest-ever study to research SYNGAP1, a disorder that causes intellectual disability, speech delay, hypotonia, and linked to a spectrum of epilepsies and autism. SYNGAP1 currently has no cure.

Mapi supports Rare disease awareness globally and proudly promotes the Zebra-print ribbon as symbol of rare-disease awareness.

Bridge the Gap – Syngap ERF began in September of 2014. A group of parents of children living with SYNGAP1 mutations came together to begin a new journey. The common bond is one driven by a desire to raise awareness and search out treatments to improve quality of life for these inspiring individuals.

The incidence of SYNGAP1 mutations reported are 1-4/10,000 individuals or approximately 1-2% of all cases of ID. A mutation in the SYNGAP1 gene results in non-syndromic intellectual disability in children ranging from mild to severe with attention deficits, impulsivity, and/or mood disorders. Seventy to eighty percent of children with SYNGAP1 also have some type of epilepsy.

"We are eager to talk with Monica Weldon and learn more of the challenges Rare Disease advocacy and driving research collaborations from the patient and care giver perspective in SYNGAP1," Commented Elan Josielewski, Mapi's VP of Strategy and Global Marketing. "Rare disease research comes with unique complexities that can delay or prevent valuable treatments from reaching patients. Engaging and working with Advocacy groups such as Bridge the Gap is critical to advancing research to improve the lives of children and their caregivers. Mapi is honored to host this webinar with Monica and promote all the amazing work she and the Bridge the gap team brings to life."

About Mapi: Patients are at the heart of everything we do™

Mapi Group has over 40 years of experience supporting Life-Science companies in developing and implementing strategies for commercializing novel treatments through Strategic Regulatory Services, Pharmacovigilance, Market Access, Language Services, and gathering Real-World Evidence on Pharmaceuticals, Biologicals, and Medical Devices. Mapi Group is the premier provider of Health Research and Commercialization services to Life-Science companies enabling Market Authorization, Market Access and Market Adoption of novel therapeutics. Visit http://www.mapigroup.com for more information

About Bridge the Gap – SYNGAP Education and Research Foundation
Bridge the Gap – SYNGAP Education and Research Foundation 501(c)(3) is a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. Most children benefit from occupational, physical and speech therapy emphasizing that early diagnosis and developmental intervention is important to ensure that affected children reach their full potential. Currently there are no treatments as researchers and clinicians are still trying to understand the biology of the disease. Our international outreach for SYNGAP1 children gathers critical information, which is needed to drive research towards more immediate therapeutic solutions. Our mission is to improve the quality of life for people affected by SYNGAP1 and provide family support, accelerating research and raising awareness. Every child with SYNGAP1 provides information that can guides us to a cure.

Press contact: [email protected]

SOURCE Mapi