Familial Hypercholesterolaemia – Getting The Global Connection
FH-CONNECT is an independent new global initiative to be launched on May 26, 2015 during the International Symposium on Atherosclerosis (ISA2015) in Amsterdam which will bring together stakeholders in FH.
The rationale for FH-CONNECT comes from the fact that Familial Hypercholesterolaemia (FH) is the most common inherited disorder in man affecting about 1 in 200/250 individuals, implying that this is of public health importance globally and more so in populations with a higher likelihood of a founder effect.
At national level many successful FH initiatives, networks and foundations are active supporting screening, diagnosis and awareness at patient, physician and government level. These initiatives support the sterling work of many dedicated clinicians/ academics who work with FH patients. However, in many cases these multiple stakeholders and patient advocates work in isolation without synergy and often duplicating their efforts.
An important unmet and critical need therefore is to establish a connection between these different stakeholders to ensure that all involved speak in unison, combine resources and share their experiences at a common forum in order to effectively tackle the diverse challenges faced by those managing this disorder.
FH-CONNECTFH-CONNECT aims to connect the global community involved in the screening, research, and management of patients with FH as well as patient advocacy groups. By providing a platform for all global stakeholders (physicians, patients, patient support groups, health care providing systems, governments and industry) FH-CONNECT will stimulate awareness and inspire all involved in FH care to share successes and pitfalls and find innovative solutions that will help address the many challenges with which we are faced in daily practice.
FH-CONNECT aims to enforce and not replace ongoing national and international initiatives in screening, diagnosis and management of FH, but by stimulating the exchange of experiences and knowledge gained over the last few decades FH-CONNECT should improve existing initiatives and potentially encourage developing countries to develop more targeted approaches to FH.
FH-CONNECT will expand on upcoming initiatives such as the EAS led FH Studies Collaboration (FHSC), a registry that will provide more in depth insights on the current burden of disease, screening and management of patients with HoFH, HeFH and other genetic subtypes in different parts of the world.
FH-CONNECTFH Connect will provide a continuum in education, and a forum for the sharing and exchange of knowledge and clinical experience as well as patient advocacy. FH-CONNECT will comprise of two different meeting formats with different aims.
- Working group sessions with FH experts/stakeholders only
- Educational session program for all attendees at ISA 2015
The former session will be smaller more interactive meeting and comprise of several “working groups” of key stakeholders tasked with looking at ways to gain synergy and develop strategic plans to overcome the obstacles to effective FH care. Each working group will be tasked with addressing an unmet-need in FH care, discuss barriers to effective care delivery and develop potential solutions. This will be further leveraged via an educational symposia with larger audiences, with a focus on dissemination to the wider community and consist of didactic talks and discussions around the global burden of FH and the problems faced with its care as well as case sharing best practice or success stories from all around the globe, including early findings from the FH Studies Collaboration.
We will avail ourselves of the opportunities to bring together key stakeholders at the EAS 2015 and the ACC 2015, to develop the working groups and outline the responsibilities prior to the launch. After the official launch in 2015, FH-CONNECT will strive to be present with working group sessions and symposia at major international cardiovascular conferences like the EAS, ESC, AHA and ACC. The idea is to offer all FH stakeholders an opportunity to connect with colleagues with a similar interest, while attending a general congress.
Focus of FH-CONNECTThe focus of FH-CONNECT is on education and awareness, as well as sharing information on how best advocacy might achieve changes in clinical care. Contents will include but are not restricted to areas such as:
- Discussing strategies for screening, patient identification
- Formulate universal definitions for diagnosis and treatment targets
- Assess available treatments
- Share experience and best practices in creating awareness
- Share emerging data of the consequences of current clinical care e.g. via the EAS FH Studies Collaboration
Participants and scope of FH-CONNECT
- FH-CONNECT will reach out to a global community and it will be ensure that in all activities there will be a geographical representation from different parts of the world
- FH-CONNECT will engage with all stake holders involved in FH including patient advocacy groups
- FH-CONNECT will stimulate involved participants to create a stimulating environment that will inspire to develop innovative solutions to address the global burden of disease in FH
- FH-CONNECT strives to create a setting where participants learn from experiences and expertise in order to avoid duplication of effort and avoiding barriers which others have resolved thereby facilitating the speed of implementation