After several months of fruitful collaboration, we are delighted to announce that FHCARE Singapore will be joining our Network. FHCARE Singapore was founded in 2016, by a small group of clinicians, headed by Professor Tavintharan Subramaniam at Khoo Teck Puat Hospital, Singapore.
The focus for FHCARE Singapore has been providing support for patients living with FH and progressively for patients with elevated Lp(a) and raining awareness of those conditions among the wider public.
Over recent months Prof Tavin and his team have identified patients with both Heterozygous FH and Homozygous FH. However, with an estimated 1 in 140 Singaporeans with HeFH and 1 in 200,000 HoFH, there is much work to do!
FH Europe Foundation team have been supporting FHCARE Singapore with strengthening the patient engagement whilst being mindful of cultural sensitivities. The biggest step to date has been a group video call at the end of June 2024 with FH patients from both organisations coming together to share experiences, culminating in a creation of a dedicated WhatsApp group specifically for FH patients in Singapore.
With a grant secured from the Singapore Ministry of Health, Prof Tavin and his team have the objective of:
In the meantime, the groups have collaborated on a significant research publication in the area of behavioural science and exploring genetic testing acceptance in FH. A joint paper under the lead of Assoc Prof Konstadina Griva (Lee Kong Chian School of Medicine, Singapore) is in the submission phase for publication.
Who Is FHCARE Singapore?
FHCARE Singapore is a dedicated organisation committed to supporting individuals and families affected by familial hypercholesterolaemia (FH). Their mission aligns perfectly with ours—to raise awareness, provide education, and advocate for better care and management of FH. An interesting fact, Singapore is an island country and city-state in maritime Southeast Asia, with a population of almost 6 million people and 3 main ethnic groups (74.0% Chinese, 13.5% Malay, 9.0% Indian, 3.4% other).
Finally meeting in person at the EAS Annual Congress in Lyon, France. From the left: Prof. Anna Abreu, Magdalena Daccord, Emma Print, Elsie Evans, Prof Tavintharan Subramaniam, Dr Wann Jia Loh.
What Does This Mean for Our Community?
With FHCARE Singapore on board, our network expands now to the Asia-Pacific region. Together, we can amplify our joint efforts to improve the lives of people with familial hyperlipidaemias (HeFH, HoFH, elevated Lp(a) and FCS), while learning about specific challenges and opportunities and developing new projects in the new region.
“It is a great honour and privilege for FHCARE Singapore to be part of the FHEF Community. Being part of this joyous and dynamic family where every voice is valued and respected, inspires our team to persevere and optimistically move forward and take meaningful positive steps to improve lives of individuals, families and communities living with FH”. (Prof Tavintharan Subramaniam)
The FH Europe Foundation (FHEF), the international network of over 30 patient organisations, dedicated to supporting individuals and families affected by familial lipid disorders, has issued an urgent statement to the Federal Joint Committee (G-BA) in response to the decision on ANGPTL3 inhibitor (Evinacumab) for patients with homozygous familial hypercholesterolaemia (HoFH) aged 12 years and older in Germany.
The G-BA is the highest decision-making body of the joint self-government of physicians, dentists, hospitals and health insurance funds in Germany. It issues directives for the benefit catalogue of the statutory health insurance funds (GKV) for more than 74 million insured persons and thus specifies which services in medical care are reimbursed by the GKV. The G-BA conducts also benefit assessment of medicinal products, where it puts every new active pharmaceutical ingredient through an early benefit assessment within six months after it is launched on the German market. During the early benefit assessment, the G-BA examines whether the drug is really something new: if it offers patients greater benefit than comparable treatments that are already available. Click here for more information.
The FHEF statement has been prepared in collaboration with international HoFH patient ambassadors and health care and policy experts and endorsed by the leading scientific society – the European Atherosclerosis Society (EAS). It emphasizes the importance of considering the underlying genetic causes of the disorder and the latest available scientific evidence, while recognising the burden of the disease and the patient lived experiences in health decisions in Germany. The statement underscores the need for personalized care and the recognition of patient safety and health economic arguments in the treatment of HoFH.
Read the statement here.
HoFH is an exceptionally severe and rare form of FH. This genetic disorder characterized by extremely high levels of low-density lipoprotein (LDL) cholesterol due to mutations in specific genes from birth. This condition significantly increases the risk of premature cardiovascular diseases, including atherosclerosis, heart attacks, and early death. Understanding the genetic underpinnings of HoFH is crucial. HoFH results from mutations in genes critical for LDL cholesterol metabolism. Targeted treatments that directly address the genetic cause of the disorder, providing more effective management than traditional therapies. In other words, traditional therapies often fall short in managing this condition, leaving patients with limited and less effective options.
HoFH is not just a medical condition; it deeply affects the daily lives and well-being of patients and their families. The disorder leads to physical disability, social exclusion, and significant psychological stress. Along with strict dietary restrictions, patients with HoFH endure frequent and invasive medical treatments like apheresis (if available) and face economic challenges due to the demanding nature of their care. The need for effective, targeted treatment options is vital to alleviate these burdens and to offer quality of life.
Read the story of Elsie Evans, a person living with HoFH here
Patient stories, like the one of Elsie’s, underscores the importance of quality of life beyond mere treatment. Elsie is not just a patient; she is professional advocate, a teacher, a coffee lover, and a traveller. Through her involvement with organisation like FH Europe Foundation, she aims to create a supportive community where patients uplift each other and improve their well-being. Elsie’s story reminds us that resilience, hope, and scientific progress can transform lives—even in the face of daunting challenges.
The treatment of HoFH necessitates precision medicine, which tailors medical treatment to the individual characteristics of each patient, taking into considerations their genetic mutations as well as sex, age, wellbeing and quality of life, among many other specific factors. Given the genetic complexity of HoFH, treatments must be specifically designed to address these unique genetic profiles.
"I eagerly anticipate the evolution of personalised treatments into practical approaches that prioritise quality over quantity of life. I envision a future where there won't be a need to advocate or share our stories, as the preventative measures we are fighting for now will change the environment into one where we are all equal when it comes to health."
Elsie’s words highlight the importance of individualised treatment, precision medicine, and access to the right therapies for each person. It is a powerful reminder that for patients with chronic, rare and severe diseases living a good quality of life is as important as staying alive and goes beyond mere treatment. It is about holistic well-being and support.
We believe that every patient deserves access to the best possible, personalised treatment options. Given the gravity of HoFH and the limited effective and appropriate innovative treatment options available in Germany, we urge the G-BA to reassess this decision and to prioritize the health and well-being of patients with HoFH in the country.
We stand ready to engage in constructive dialogue to ensure that the needs of HoFH patients are adequately addressed. Thank you for your attention to this critical matter.
Read the statement here.