On March 28, Project HOPE and UCB signed an agreement to extend the Rainbow Bridge - HOPE and Care for Children with Epilepsy Program (Rainbow Bridge program) for another three years. The second stage kick-off will provide upgraded integrated care to even more Chinese children living with epilepsy and their families.
The Rainbow Bridge program, initiated by Project HOPE and UCB in 2013, embraces multiple educational aspects to enhance epilepsy care for children in China. The activities cultivate hope, joy and confidence in the children and their families. They also enhance proper diagnosis, treatment and referrals among pediatricians, and strive to increase disease awareness while eliminating the stigma surrounding the disease. The initiatives are supported by the China Association Against Epilepsy (CAAE) and the Pediatric Neurology Committee of the Chinese Society of Pediatric, Chinese Medical Association.
“China has more than 9 million people with epilepsy,” says Geng Qian, senior regional director, China and Japan, for Project HOPE, when reviewing the program. “New cases are occurring at the rate of 400,000 each year, particularly among children and teenagers. About 63 percent of patients haven’t received standard treatment. In order to help children with epilepsy better control the disease and enjoy a brighter future, and support their families during the difficult time, Project HOPE collaborated with UCB, the Shanghai Children’s Medical Center and more than 10 leading hospitals in China to implement the first stage of the Rainbow Bridge program. It was well received by the target audience.”
Ms. Liu, the mother of a child with epilepsy, shared her story during the signing ceremony. “It was really hard to accept the reality when my child was diagnosed with epilepsy,” she recalls. “I still remember the first time we joined the Rainbow Weekend activities. I went in with tears but went out with a smile. Thank you very much for all you have done for us.”
Based on the experience acquired from the past four years’ execution, UCB will continue to work with Project HOPE to upgrade efforts to improve the quality of life of children with epilepsy and the ecosystem around them. This upgrade will include improving integration of the tertiary and primary healthcare systems, enhancing public awareness to reduce stigma, improving treatment compliance and home care for children with epilepsy, and ensuring access to care for children who are transitioning to adulthood.
Dr. Dirk Teuwen is the head of Corporate Societal Responsibility for UCB. “The Rainbow Bridge program is an important part of UCB’s global corporate social responsibility efforts,” says Dr. Teuwen. “We are pleased to see that the achievements over the past four years have made a real difference for children with epilepsy and their families in China. Many thanks to all the healthcare professionals and Project HOPE staff who have made great contributions to make it happen. We are proud to be partnering with you again to create more value for Chinese children with epilepsy through the second stage of this program.”
Rainbow Bridge Achievements:
An improvement in the capability of health care professionals
- Participation by 1,675 pediatricians and general physicians from 28 provinces in 17 on-site neurology training sessions and one international forum
- The development of a “Pediatric Epilepsy Primary Care Training Manual” with 1,960 copies distributed.
- Online training was made available on a 24-hour medical broadcasting platform to get CME credits. This enabled physicians in remote areas of China to obtain the latest disease and diagnosis information for children living with epilepsy; 17,022 physicians have completed online courses.
An improvement in home care skills for parents
- 77 educational sessions for parents were conducted at participating hospitals in seven cities, providing 1,238 parents a better understanding of epilepsy and epilepsy care.
- 12 Rainbow Weekend activities were organized, benefiting 173 families. Parents could ask questions during dedicated sessions with neurologists while Rainbow Bridge staff entertained children. WeChat groups were also established to boost communication among parents and enable them to help each other.
An improvement in the public awareness of epilepsy
- 10 training sessions were provided to school health teachers to offer them insights on what to do and what not to do when children have seizures at school. 830 teachers attended.
- Several events were held on China Epilepsy Care Day, including public education and free medical consultation for patients.
- A three-minute video entitled “Lolo, Living with Epilepsy” was produced to raise disease awareness and reduce stigma. Over 320,000 people watched it at participating hospitals and on media platforms.
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