Table 3.

Overcoming challenges.

Overcoming challenges for hemophilia care in Canada
Care and treatment15, 17, 32	The CHS works diligently to maintain and improve a network of treatment centers for bleeding disorders, serving people in all Canadian provinces. The CHS hosted Rendez-vous in 2017, a medical and scientific symposium for networking, training and providing development opportunities to health care teams at the 26 treatment centers across the country. The CHS also funded and provided logistical support for annual and regional meetings of the nursing, physiotherapy and social work groups. This support is crucial to maintain the standards of care and keep the medical community abreast of the state-of-the-art developments in the care and treatment of people with bleeding disorders CHS Report 2017.
Support and education15, 17	The quality of work of the CHS is best represented through its exceptional publications and life-changing workshops. It: Increases knowledge, networking and peer support among people who suffer from rare inherited bleeding disorders Increases the understanding of the impact of aging on people affected by an inherited bleeding disorder Enables parents to increase their skills and knowledge on raising a child with a bleeding disorder - two regional Parents Empowering Parents (PEP) workshops were delivered across Canada Increases awareness and knowledge among women and health care providers of symptoms, diagnosis and treatment of bleeding disorders, such as the von Willebrand disease, through a targeted outreach program called CODE rouge
Awareness15, 17	CHS undertook awareness initiatives at two levels to achieve optimal comprehensive care for all people with inherited bleeding disorders: The health care providers who may come into contact with people with inherited bleeding disorders The general population The new CHS awareness program, When Women Bleed Too Much, increased awareness and knowledge among women and health care providers of the symptoms, diagnosis and treatment of bleeding disorders, such as the von Willebrand disease.
Research15, 17	The CHS provides clinical and research fellowships and funds to leading Canadian researchers in the field of bleeding disorders The CHS funded seven research projects through three different research programs: The CHS Dream of a Cure Research Program The CHS/Pfizer Care until Cure Research Program The CHS/Shire Fellowship Program
Safe and secure blood supply15, 17	The CHS is the leading patient organization in Canada to independently monitor the safety and supply of blood and blood products within the Canadian blood system The CHS representatives participate actively, and continue to be a strong voice, in Health Canada, Canadian Blood Services, Héma-Québec and provincial government blood advisory committees, to ensure that all Canadians have access to safe blood products in adequate supply The Canadian Hemophilia Society is active in ensuring the safety of the blood supply in Canada through constant vigilance and monitoring for all Canadians CHS report 2017

Overcoming challenges for hemophilia care in China
Improving comprehensive care14	A number of HTCCNC member hematologists (11), physiatrist (one), nurses (five) and laboratory scientist (one) have received or will be receiving the WFH short-term (5–8 weeks) fellowships for targeted training at various WFH IHTC since 1997 These trained personnel are now in leadership roles at their own centers – and many are chairing the various HTCCNC working groups. They are in a position to develop comprehensive hemophilia care in the true sense For example, Beijing formed a consortium of four hospitals to provide comprehensive care to adults and children, in addition to emergency care and special diagnostic testing.
Innovative reimbursement schemes24	Some cities in China pioneered innovative policies for a better coverage for hemophilia patients, such as: The Guangzhou health insurance bureau decreased hemophilia co-payments to less than 10% after their extensive review of the economics of hemophilia treatment The local health insurance bureau in Qingdao decided to joint-fund prophylaxis treatment for pediatric patients with a FVIII manufacturer.
Improving awareness23	Some patients created a website named Hemophilia Home of China (HHC) (www.xueyou.org) in May 2000. The hemophilia patient organization, the Hemophilia Home of China, was established in October 2000 because of the website The HHC website was updated in 2003 with the support and assistance of the WFH. The updated website includes basic knowledge, Chinese traditional medicine, treatment guides, media reports, online doctor services, registration of patients, hemophilia news, knowledge of hemophilia, hemophilia experience, hemophilia life, online surveys, e-magazines, chat room, guestbook, forums and other items Six experts, including a pediatrician, emergency physician, nurse, dentist, psychologist and physiotherapist, contribute their time and energy to answer patient questions on hemophilia through the website Moreover, prominent national hemophilia experts are invited to deliver hemophilia-related lectures via a video chat room and answer patient questions This gives many patients in remote areas the opportunity to consult these experts face-to-face. The HHC website not only gives them knowledge and information, but also provides a platform for them to communicate with the outside world
Improving the usage rate of the prophylaxis regimen13	The HTTCNC, which includes a prophylaxis working group, was established with the WFH to improve the care of PWH The HTCCNC began studies evaluating the delivery of low-dose prophylaxis in boys with severe hemophilia A (10 IU/kg twice a week) and hemophilia B (20IU/kg weekly) due to the lack of affordability of standard full-dose prophylaxis for most families in China1
Twinning program with Canada14, 33	A twinning program was initiated in China from 1997 to 2007 by the WFH. The earlier six China HTCs were twinned with Canadian HTCs; China became a WFH Global Alliance for Progress (GAP) Program member in 2009 to improve the diagnosis and treatment of people with hemophilia with the successful conclusion of the WFH Center Twinning Program in China at the end of 2007
Ongoing projects to improve hemophilia in China	Hemophilia Data Management System Project Global Alliance for Progress Novo Nordisk Hemophilia Foundation - Phase I and II China Hemophilia Treatment Center Project Kogenate FS Patient Assistance Program