Activating the FH Global Community

In 1998, the World Health Organization (WHO) and several members of the international FH Community published the WHO Report on Familial Hypercholesterolemia (FH). This prescient document included 11 recommendations to address the large gaps in diagnosis and care of individuals with FH around the world. In the more than 20 years since its publication, only a few of these recommendations have been widely implemented on a country-by-country basis and an entire generation of impacted individuals with FH has been lost to premature heart disease.

During the 2018 FH Global Summit, the Family Heart Foundation initiated a Global Call to Action to update the original recommendations and create an advocacy tool to drive FH awareness around the world and to implement the updated recommendations. We partnered with World Heart Federation (WHF) to convene the international FH Community of impacted individuals, advocacy leaders, international associations, scientific experts, policymakers and the original authors of the 1998 report to collaborate together to reexamine the recommendations and update them to meet the needs of today’s FH population.

Two meetings were hosted by the Family Heart Foundation and WHF in Marina del Ray, California on October 3 and in Dubai, United Arab Emirates on December 6 of last year. This created a coalition of 40 countries and 90 stakeholders who provided their perspectives of FH from low-, middle-, and high-income regions. Together, with the leadership of Dr. Sam Gidding, Jasmine Patel, and Katherine Wilemon from the Family Heart Foundation, and Dr. Thomas Gaziano from the WHF, a set of eight global public policy recommendations covering awareness, advocacy, screening, diagnosis, treatment, research, registries, and cost/value were created.

The Global Call to Action has been submitted to a high-impact cardiology journal and intends to refocus attention on FH as a global health priority. We look forward to having our 3rd FH Global Call to Action meeting in Atlanta on October 22.

Author List: Katherine A. Wilemon, Jasmine Patel, MPH, Carlos Aguilar-Salinas, MD, Catherine D. Ahmed, MBA, Mutaz Alknifsawi, MD, Wael Almahmeed, MD, Rodrigo Alonso, MD, Khalid Al-Rasadi, MD, Lina Badimon, PhD, Luz M. Bernal, PhD, MSc, Martin P. Bogsrud, MD, PhD, Lynne T. Braun, PhD, CNP, Liam Brunham, MD, PhD, Alberico L. Catapano, MD, PhD, Kristyna Čillíková, Pablo Corral, MD, Regina Cuevas, Joep C. Defesche, PhD, Olivier S. Descamps, MD, PhD, Sarah de Ferranti, MD, MPH, Jean-Luc Eiselé, PhD, MSc, Gerardo Elikir, MD, Emanuela Folco, PhD, Tomas Freiberger, MD, PhD, Francesco Fuggetta, BA (Hons), Isabel M. Gaspar, MD, Ákos G. Gesztes, PharmD, Urh Grošelj, MD, PhD, Ian Hamilton-Craig, MBBS, PhD, Gabriele Hanauer-Mader, Mariko Harada-Shiba, MD, PhD, Gloria Hastings, G. Kees Hovingh, MD, PhD, Maria C. Izar, MD, PhD, Allison Jamison, MBA, Gunnar N. Karlsson, Meral Kayikçioğlu, MD, Sue Koob, MPA, Masahiro Koseki, MD, PhD, Stacey Lane, JD, Marcos M. Lima-Martinez, MD, Greizy López, PhD, Tania L. Martinez, David Marais, MD, Letrillart Marion, Pedro Mata, MD, Inese Maurina, Diana Maxwell, Roopa Mehta, MD, George A. Mensah, MD, André R. Miserez, MD, Dermot Neely, MD, Stephen J. Nicholls, MBBS, PhD, Atsushi Nohara, MD, PhD, Børge Nordestgaard, MD, DMSc, Leiv Ose, MD, PhD, Athanasios Pallidis, Jing Pang, PhD, Jules Payne, Amy L. Peterson, MD, Monica P. Popescu, Raman Puri, MD, Kausik K, Ray, MD, Ashraf Reda, MD, Tiziana Sampietro, MD, PhD, Raul D. Santos, MD, Inge Schalkers, PhD, Laura Schreier, PhD, Michael Shapiro, DO, Eric Sijbrands, MD, PhD, Daniel Soffer, MD, Claudia Stefanutti, MD, PhD, Mario Stoll, MD, Rody G. Sy, MD, Martha L. Tamayo, MD, MSc, Myra K. Tilney, MD, MBA, Lale Tokgözoğlu, MD, Brian Tomlinson, MD, BSc, Antonio J. Vallejo-Vaz, MD, PhD, Alejandra Vazquez-Cárdenas, MD, PhD, Patrícia Vieira de Luca, MSc, David S. Wald, MD, Gerald F. Watts, DSc. PhD, Nanette K. Wenger, MD, Michaela Wolf, David Wood, MD, Aram Zegerius, Thomas A. Gaziano, MD, MSc, and Samuel S. Gidding, MD.