Are you ready to unite for HoFH Awareness?
The launch of the first-ever HoFH Awareness Day on May the 4th is approaching with the speed of light and we've been working tirelessly to prepare for this important event. From educational resources to community outreach initiatives, we are committed to making HoFH Awareness Day a resounding success.
🌎 But we can't and don’t want to do it alone.
United with the World Heart Federation, the International Atherosclerosis Society, the European Atherosclerosis Society, the Family Heart Foundation and the Global Heart Hub, we now INVITE YOU to get ready to channel your inner Jedi and unite against the dark side of HoFH.
🌠 REGISTER and JOIN our Galaxy online meeting and find out more about what the first-ever HoFH Awareness Day is all about and how you can contribute, participate, get empowered or simply help us spread the word.
WHEN?
🚀 Here’s what awaits you in our campaign kick-off online meeting:
The meeting will be led by our super trio Emma Print, FHEF Community Engagement Manager, Chyrel Lichaa, HoFH Galactic Ambassador and Project Manager and Elsie Evans, FHEF Ambassador Programme Project Manager.
As you may know, HoFH (Homozygous Familial Hypercholesterolaemia) affects individuals from birth and significantly increases the risk of heart disease already early in life. Despite its severity and the urgency to act, HoFH remains largely underdiagnosed and misunderstood. Even more surprisingly as HoFH occurs in families affected with FH, a very common inherited high cholesterol disorder.
That's why it's crucial for us to come together to raise awareness and support those living with this condition. And for that reason, we have chosen a special day and a special slogan - Unite for HoFH Awareness: One Galaxy, One Heart!
HoFH Awareness Day 2024 launch activities are supported by grant funding from Arrowhead Pharmaceuticals, Chiesi and Ultragenyx.
On 14th April, our youngest patient ambassador, Elisete Poobus (6 years old), along with her family, was invited to the 30th Anniversary conference of the Estonian Phenylketonuria Association, to provide an insight into living with FCS (Familial Chylomicronaemia Syndrome).
Elisete’s mother, Teevi Poobus, gave a short presentation explaining how Elisete was first diagnosed and how they, as a family, dealt with this news. She also spoke about the symptoms associated with FCS, and the strict diet Elisete must follow. Patients with FCS are restricted to a maximum of 20g of fat per day, while for Elisete at 6years old, it’s just 5g!!! This includes ‘good’ fats such as nuts, seeds, avocado, olive oil.
During her presentation, Teevi also gave huge thanks to the healthcare professionals in the hospital that treat Elisete and those who have supported her family on this journey. Teevi said that “although it is Elisete with the diagnosis, it feels like it is my own too”.
There is no patient organisation in Estonia for people with FCS, so the family struggled to find support and had to deal with government bureaucracy alone in an effort to find help.
In 2023 Teevi found FH Europe Foundation, which already had a supportive group of people across Europe and the US living with FCS. In November Teevi and Elisete were invited to Amsterdam for the FH Europe Foundation annual conference, where they were able to unite with other FCS patients. Although Elisete was the youngest among them, she was comfortable with all the attention and rocked her moves on the dance floor!
The positive outcome of Elisete's and her mum's advocacy work at the April meeting has been an offer to help the Poobus family get FCS recognised in Estonia as a condition that needed urgent support. Fingers crossed it works out this time!
Prepared by : Teevi Poobus, FCS Ambassador from Estonia
Today, 24 March, is Lp(a) Awareness Day. Elevated lipoprotein(a), or Lp(a) concentration, is an inherited lipid condition and an independent, very significant risk factor for cardiovascular disease. While elevated Lp(a) levels can be diagnosed through a simple blood test, it is estimated that one in five people have elevated Lp(a) concentrations, significantly increasing their risk for heart attacks and strokes, even at a young age.
Alarmingly, only 1% of the population in middle- and high-income countries have had an Lp(a) measurement and most of those with elevated concentrations are not informed about their increased risk of experiencing a first or recurrent cardiovascular event. There is very little public awareness about this common inherited risk factor, and there is also limited awareness and knowledge among general practitioners (GPs) and the wider healthcare professionals' community.
This presents a crucial missed opportunity for CVD prevention, early detection, the avoidance of costly treatment, care and hospital admissions impacting on the already stretched health systems and the significant burden to individuals and their families across their life course, following a CVD episode.
Given the gravity of elevated Lp(a), FH Europe Foundation set up a dedicated Lp(a) International Task Force in 2023, to develop and implement a five year strategy to address major gaps in policy, awareness, understanding of cost-effectiveness, personalised prevention approaches, and the role of digitalisation and data in encouraging a more comprehensive approach to systematic testing of populations. Professor Florian Kronenberg, Chair of the Task Force said “This Task Force is unique as it is composed of Lp(a) experts and experts from other disciplines from across the globe, to focus on making Lp(a) testing the norm and managing this alongside other risk factors”.
Emma Print, FH Europe Foundation’s Community Engagement Manager has been coordinating activities around the Lp(a) Awareness Day. She said “As a person living with Lp(a) and FH, I am grateful that I was diagnosed relatively early – but I met formidable barriers in the process. I now have the privilege of working with the FH Europe Foundation and to help raise awareness among as many people as possible, today – and indeed all days. We work with Lp(a) Ambassadors, who have the lived experience and knowledge, to share their powerful stories, like the one of Marc’s”.
This year we really wanted to support the community by providing them with the opportunity to “Ask Me Anything About Lp(a)”. Through our social media and email campaign we encouraged members of the public to complete an online form enabling them to ask any question about Lp(a) to our international panel of experts which included researchers, clinicians and people living with elevated Lp(a). The response was tremendous and culminated in a webinar on Thursday 21st March where our experts answered as many of the questions as possible.
The FH Europe Foundation is committed to building awareness- year on year- among the public and physicians on the importance of measuring for Lp(a). A particular feature this year, however, is an Open Letter from the International Task Force to policymakers and, setting it in the context of the wider burden of cardiovascular disease and the urgent need to ‘prevent the preventable’. Magdalena Daccord, FH Europe Foundation CEO said “We are deeply concerned that elevated Lp(a) is largely invisible in the health policy space, and we need to change that. With the International Task Force, we are creating an unprecedented momentum to finally get this on the political radar”.
For press queries, please contact Magdalena Daccord on md@fheurope.org .
More about FH Europe Foundation: https://fhef.org/
More about the Lp(a) International Task Force: https://fhef.org/lpa-international-taskforce/