Prioritizing Familial Hypercholesterolemia as Global Health Concern

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FH Foundation Driving Global Policy Collaborations with the World Heart Federation and International FH Community

In December 2018, three FH Foundation team members — Katherine Wilemon, founder and CEO, Dr. Sam Gidding, chief medical officer, and Jasmine Patel, community relations manager — attended the 2018 World Congress of Cardiology and Cardiovascular Health in Dubai, United Arab Emirates. Over 4,300 world leaders in cardiovascular health from 119 countries were present to share insights and drive the global fight against cardiovascular disease (CVD).

3rd Global Summit on Circulatory Health

In the lead up to the 2018 WCC, the FH Foundation participated in the 3rd Global Summit on Circulatory Health on December 4th and 5th. Leaders in healthcare, academia, civil society, and the private sector collaborated together to drive action on the timely need to improve access to essential medicines and technologies. Fragmented supply chains, continued increase in the production of false medicines, and limited global investments in health were highlighted as the pressing challenges we face today. Dr. George Mensah from the National Heart Lung and Blood Institute (NHLBI) spoke to the amazing success that for commercial organizations have had in distributing their products across the globe.  He posed a challenge to all of us advocating on behalf of more access to healthcare, “what can we learn from private companies who manage to get sodas and tobacco to every place on earth?”

2nd Global Call to Action meeting on Familial Hypercholesterolemia (FH)

On December 6th, the FH Foundation and World Heart Federation cohosted the second Global Call to Action on FH meeting. The FH Foundation and World Heart Federation’s goal of partnering together, and collaborating with the global FH Community, is to reinvigorate the World Health Organization’s (WHO) interest in prioritizing FH within their CVD prevention framework to reduce deaths from non-communicable diseases (NCDs).  This international roundtable progressed the work that began during the first Global Call to Action meeting on October 3rd, 2018.

20 years ago, FH experts from 6 continents drove the recognition of FH as a global public health hazard within the WHO and created the 1998 WHO Report on Familial Hypercholesterolemia. The FH Foundation unearthed this prescient document and shared it with the entire FH Global Community at our 2018 FH Global Summit, culminating in a renewed call to action. The report outlined 11 key recommendations to address the large gaps in diagnosis and care of FH worldwide. Unfortunately, in the intervening years, most of the recommendations have not been implemented on a country-by-country basis

More work needs to be done.

Now, we are working together as an international community to address these gaps in care and support each other’s efforts across the globe. We have representation from more than 35 countries and from multiple perspectives including individuals with FH, advocacy leaders, medical experts, and policy makers. In 2019, the FH Foundation and World Heart Federation will work together to drive policy changes for FH and actively engage with the WHO.

FH Foundation and IAS Joint Session on FH

On December 8th, the FH Foundation concluded our week in Dubai by jointly hosting a session with the International Atherosclerosis Society (IAS) titled “Recognize FH and Save Lives.” Katherine Wilemon and Raul Santos MD, PhD, President of the IAS, co-chaired a series of presentations that highlighted current diagnosis rates around the world, available therapies, effective family screening strategies, and the impact early diagnosis has on family generations.

 

Speakers included by Khalid Al Rasadi, MD from the Oman Society of Lipid and Atherosclerosis (OSLA), Meral Kayikçioglu, MD from the Turkish Society of Cardiology, Rodrigo Alonso, MD from IAS Chile and FH Iberoamerican Network, and Sam Gidding, MD of the FH Foundation. All talks incorporated international FH registry data including the FH Foundation’s CASCADE FH® Registry, the SAFEHEART Registry, the Gulf FH Registry, and the Turkish FH Registry.

Agenda

December 8th,  9:30 – 10:30am

Co-chairs:
Katherine Wilemon & Raul Santos, MD, PhD

What we know about Familial Hypercholesterolemia today:
Khalid Al Rasadi, MD, Oman Society of Lipid and Atherosclerosis (OSLA),

Treatment goals for the Familial Hypercholesterolemia population:
Meral Kayikçioglu, MD, Turkish Society of Cardiology

FH Registries tell a story, improves scientific understanding, and drives policy change:
Rodrigo Alonso, MD, IAS Chile and FH Iberoamerican Network

Familial Hypercholesterolemia: Global Call to Action:
Samuel Gidding, MD

Click HERE to view the slide library from the “Recognize FH and Save Lives” session.

Thank you

We are immensely grateful for the continued support from the international FH Community and the amazing friendships we have with those around the world who share a common goal of raising awareness and saving the lives of over 30 million people around the world who are impacted by FH.

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