DEERFIELD, Ill.--(BUSINESS WIRE)--
UnderStanding Together was launched today for parents of children with infantile spasms (IS), a difficult form of epilepsy that usually affects children between the ages of four and eight months.1 This Lundbeck program connects parents coping with this diagnosis with others who have faced similar challenges and have experience with Lundbecks treatment for IS, SABRIL (vigabatrin). By calling 855-417-7859, families can enroll in the program to speak on the phone with another parent who has a child with infantile spasms.
A diagnosis of infantile spasms can be overwhelming, making treatment decisions very difficult. Recommendations issued by the National Organization for Rare Diseases (NORD),2 the American Academy of Neurology (AAN)3 and the Tuberous Sclerosis (TS) Alliance4 all agree that infantile spasms be diagnosed as early as possible and managed with one of two approved treatments.
SABRIL is approved by the U.S. Food and Drug Administration as monotherapy for pediatric patients one month to two years of age with infantile spasms for whom the potential benefits outweigh the potential risk of permanent vision loss.5,6 In evaluating whether to start SABRIL, doctors and parents work together to assess the risk of vision loss versus the benefit of the medication. There are other serious risks associated with SABRIL. Please see the important safety information below for more details.
When my daughter Addie first started experiencing infantile spasms, we were desperate to find ways to help her. I spent hours researching online, and the information I found was overwhelming, says Karen, a mother who will speak with other parents on the telephone via the UnderStanding Together program. It was extremely helpful to connect with other families who had already gone through the initial shock and decision making associated with an infantile spasms diagnosis. Now its come full circle, and Im able to talk with others in a similar situation.
Participants in the UnderStanding Together program will be paired up with parents whose children have IS and have used SABRIL. They can ask questions and discuss experiences to learn how the parent worked with a healthcare team through the decision-making process they faced. Following the call, participants will receive additional information and resources in the mail.
SABRIL has been prescribed to more than 2,500 infantile spasms patients, according to our SABRIL patient registry, which collects information on all patients who have taken SABRIL since its approval in 2009,7 said Amy Magro, Director of Epilepsy Marketing at Lundbeck. We know how tough treatment decisions can be for parents of children with IS, and this program is part of our ongoing commitment to support both families and health care professionals in making informed decisions.
For more information, please visit http://www.SABRIL.net. To enroll in the UnderStanding Together program, call toll-free 855-417-7859.
About Infantile Spasms
Infantile spasms is a difficult-to-treat epilepsy syndrome that usually strikes infants between four to eight months old.1 Infants suffer spasms that typically last for one to five seconds and occur in clusters of up to 100 spasms at a time.8,9 Each year approximately 2,000 to 2,500 new cases of IS are reported in the U.S.9 SABRIL may not be appropriate for use in all patients with IS.
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Lundbeck Launches Support Program for Parents of Children with Infantile Spasms