OnJanuary 24, 2018   Annette Bakker, PhD. Children’s Tumor Foundation (CTF) President and Chief ScientificOfficer, and Richard Soll, PhD. Senior Vice President of WuXi AppTec visited thegroup of Prof. Pi nan Liu, President of Beijing Children's Tumor Foundation. atBeijing Neurosurgical Institute of Tiantan Hospital. They had indepthdiscussions on how to conduct clinical studies of neurofibromatosis and rarediseases in China as well as the collaboration and publicity opportunities betweentwo foundations. The participants agreed on potential cooperation in variousfields, and promote the implementation in the next three years.

 Annette Bakker主席首先向大家介绍了美国儿童肿瘤基金会（CTF）四十年来的发展历程以及在神经纤维瘤病领域所取得的多项成果。美国儿童肿瘤基金会的前身是国家神经纤维瘤病基金会（NNFF），是由NF患者与主治医生创立。该基金会专注于神经纤维瘤病这一领域，以推动科研进程、推广疾病知识和关怀患者群体为导向，旨在最终攻克神经纤维瘤病这一医学难题。历经40年的发展，儿童肿瘤基金会已将医学专家、患者群体、慈善家和医药企业紧密联结在一起。与此同时，基金会对神经纤维瘤病科研领域的贡献有目共睹。创立了神经纤维瘤病资料库和标本库，并联合医学专家开展丛状神经纤维瘤的药物试验，开发出了首个由美国FDA批准的靶向药物。

Annette Bakker first introduced the history and achievements of the CTF which was foundedby neurofibromatosis (NF) patients and physicians and formerly known as theNational Neurofibromatosis Foundation (NNFF). The CTF focuses on the area ofneurofibromatosis, the mission of CTF is to drive scientific research, expandknowledge and advance care for the NF community, and CTF’s vision is to end NF.Over the past 40 years, the CTF had developed a unique collaboration model withmedical experts, clinicians, patients, funders and pharmaceutical companies. TheCTF had made significant contributions to the field of NF research. . The NFdata hub and the CTF Biobank have been established.  CTF also supported the targeted drug trialsand got promising results in FDA approval drugs against MPNST.

  同时，Annette Bakker表达了CTF与北京天坛医院、北京市神经外科研究所及北京首善儿童肿瘤基金会开展深入合作的愿望。CTF希望在我国建立分支机构推广该基金会的运营模式，并将联合阿斯利康、药明康德等医药企业推动神经纤维瘤病靶向药物在中国的临床应用，从而推动我国乃至全世界神经纤维瘤病的诊疗水平。此外，药明康德副总裁Richard Soll先生同样表达了对推动新药在神经纤维瘤病及其他罕见病临床应用的浓厚兴趣，并承诺将此方向作为公司未来发展的重点之一。药明康德作为全球知名的综合性医药企业，已为全球客户提供了诸多高质量的医药研发服务，公司迫切希望研发出更多造福患者的新药及产品。

Annette Bakker expressed CTF’s interest in further cooperation between CTF and BeijingTiantan Hospital, Beijing Neurosurgical Institute as well as BJCTF. CTF hopesto set up branch offices in China to promote its operation patterns, andexpects to promote the clinical application of targeted drugs in China by workingwith pharmaceutical companies such as AstraZeneca and WuXi AppTek for thediagnosis and treatment of NF. In addition, Richard Soll, Senior Vice Presidentof WuXi AppTech, also expressed his interest in promoting the clinicalapplication of new drugs in neurofibromatosis and other rare diseases and indicatedthis direction to be one of the focuses of the company's development. As aworld-renowned comprehensive pharmaceutical company, WuXi AppTech has providedmany high-quality medical services worldwide. The company is eager to developnew targeted drugs and products for the benefit of patients.

 北京首善儿童肿瘤基金会监事长赵赋医生和副秘书长郭黎博士向两位来宾详细介绍了基金会发展历程及在神经纤维瘤病领域取得的科研进展。北京首善儿童肿瘤基金会是由王忠诚院士、韩德民院士以及张金哲院士共同发起，并由我国众多医疗专家共同创立的慈善组织。其宗旨是通过普及儿童肿瘤知识、及时有效的救治病患、关爱和救助贫困儿童肿瘤患者等手段推动我国儿童肿瘤防治和科研水平的进步。目前，基金会正努力建立我国首个神经纤维瘤病患者数据库，并开展了多项与神经纤维瘤病诊疗相关的科学研究，特别在分子生物学机制研究、动物模型建立和药物临床试验领域取得了诸多成果。基金会力求达成控制我国儿童肿瘤发生与发展的最终目的，并努力成为我国神经纤维瘤病公益事业的开拓者和推动者。

 Dr. FuZhao, board chair of Beijing Children’s Tumor Foundation (BJCTF) and Dr. Li Guo,vice executive secretary of the foundation, made a brief introduction of BJCTFand its development in the field of neurofibromatosis. The BJCTF is acharitable organization jointly founded by Dr. Zhongcheng Wang, Dr. Demin Han andDr. Jinzhe Zhang, and co-founded by many other medical experts. The main goal ofthe foundation is popularizing the knowledge of children's tumors, providingtimely and effective treatment, and giving financial assistance to some patientsin China. Meanwhile, the BJCTF is trying to establish a database of Chinese NFpatients, the BJCTF has supported the scientific research in NF pathogenesis, NF animal models establishment and targeteddrug trials. The Foundation pursues to control the occurrence and developmentof NF tumors and strives to become a pioneer and promoter of pediatric cancerwelfare in China.

 随后，双方针对各自关注的问题展开了热烈的讨论。Annette Bakker主席希望加深对中国神经纤维瘤病防治现状的了解，并希望双方开展紧密而有效的合作。刘丕楠理事长高度赞扬了美国儿童肿瘤基金会在神经纤维瘤医疗、科研工作中的突出成就，并指出在诸多方面值得我们学习和借鉴。当前，我国神经纤维瘤病的防治工作还处于起步阶段，双方有必要在建设神经纤维瘤病患者数据库、药物试验和普及疾病知识等方面开展深入合作。

 Afterwards,the participants held helpful discussions on the issues of their respectiveconcerns. President Annette Bakker wanted to understand the current status ofprevention and treatment of NF in China, and the problems to be solved, and shehopes both foundations will carry out close and effective cooperation. PresidentPinan Liu highly praised the CTF’s contributions and achievements and he pointedout that the prevention and medical care of NF in China is still in its infancy.Thus,  it is necessary for both parties tocooperate in building NF database, developing drug trials and popularizing diseaseknowledge, etc.

 会议在愉快和充满希望的氛围中落下帷幕，会后各嘉宾合影并交换宣传册以作纪念。我们衷心希望这次会晤能成为两个基金会相互了解的窗口，并希望今后双方的合作能迈出坚实的步伐，更好地为实现攻克神经纤维瘤病这一宏伟愿景做出贡献。

 Themeeting came to an end in a pleasant and encouraged atmosphere. After the meeting,the guests took a group photo and exchanged brochures. This meeting will becomea window to promote mutual understanding between the two foundations, and the colloborationbetween two foundations are expected to make new contributions to end NF.

网站链接：

美国儿童肿瘤基金会：www.ctf.org

上海药明康德新药开发有限公司：www.wuxiapptec.com.cn

北京首善儿童肿瘤基金会：www.bjctf.com