Embrace the excitement of the upcoming year with FH Europe Foundation's Events Calendar for 2024! As we gear up for a thrilling year ahead, our dedicated team has prepared this calendar with easy colour-coded highlights, making it your go-to guide for the exciting events on our radar:
From key awareness days and events marked in red, signifying major initiatives and campaigns where your involvement is crucial, to relevant awareness days and events in dark blue, encouraging your engagement through likes, shares, and comments for a broader impact. Additionally, discover days worth knowing about in the context of health and well-being, marked in light blue.
Open and download the 2024 Awareness Days and Events Calendar.
Be part of the action and let´s make 2024 a year of shared moments, impactful campaigns, and a healthier world. Join us on this exciting journey!
Explore the highlights from FH Europe's January 2024 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
- FH Europe Foundation's organization of the PERFECTO kick-off meeting.
- FH Europe Foundation's participation in the PerMed FH kick-off meeting in Lisbon.
- Rare Disease Day – learn how to get involved.
- Driving Newborn Screening Innovations: Collaborative Efforts for Early Rare Diseases Detection.
- Europe Rare Disease Summit 2024 and how to get your free ticket.
- Information on Lp(a) Awareness Day happening in March.
- Patient advocates' voice represented in the Scientific Program Committee for the 20th International Symposium on Atherosclerosis 2024.
- Download your Awareness Day and Events Calendar 2024.
- OECD's PaRIS Initiative: Revolutionizing Patient-Centric Healthcare Globally.
- Bulgaria’s high-level policy round table to address FH pediatric screening in the country.
- Ireland’s first health checks of the year and engaging Policy-Makers at Home and Abroad.
- Italy’s 2024 initiatives for Elevating Cardiovascular Health Awareness.
- Heart UK’s HoFH Networking Day happening at the end of February.
- Global Heart Hub's Milestone: 100+ Supporters for the Global Cholesterol Action Plan in 2023.
- EURORDIS’ European Conference on Rare Diseases and Orphan Products 2024 and launching of the Social Policy Action Group (SPAG).
- European Patients Forum’s call to join the HEU-EFS patient advisory group.
- World Heart Federation’s representation of the global cardiovascular community at the 154th Executive Board of the World Health Organization, implementing the WHF Roadmap for Cardiovascular Disease Prevention and their new strategy for the next two years.
- EFPIA’s virtual event: Getting to the heart of the matter: improving cardiovascular health in Europe.
- New publications on International Atherosclerosis Society Roadmap for Familial Hypercholesterolemia, Recommendations of the Experts of the Polish Cardiac Society (PCS), and the Polish Lipid Association (PoLA) on the diagnosis and management of elevated lipoprotein(a) levels, LDL-C–Lowering Therapies for Adults and Children with Homozygous Familial Hypercholesterolemia: Challenges and Successes, Rare Disease Moonshot: Europe’s Public-Private Coalition to Erase the Rare Disease “White Spots”.
- Novel treatment for HoFH available now for children in the UK.
- Upcoming events you shouldn't miss.
Read the Full Newsletter
FH Europe Foundation supports Rare Disease Day, observed annually on the final day of February. This year marks an extraordinary occurrence, as it falls on the rarest day, Thursday, February 29th.
FH Europe Foundation advocates for the two rare familial hyperlipidaemias, Homozygous Familial Hypercholesterolaemia (HoFH) and Familial Chylomicronaemia Syndrome (FCS) which share many commonalities with the 6000+ rare diseases currently identified. [1] FCS has a dedicated rare disease that falls on the first Friday in November, and this year we’re delighted to be announcing the very first dedicated HoFH awareness day on 4th May in which we’ll be raising awareness of the impact of HoFH on individuals and their families.
What is Rare Disease Day?
Rare Disease Day was created in 2008 by EURORDIS, the European Organisation for Rare Diseases and is coordinated by EURORDIS and its 65+ national alliance patient organisation partners. Over the years it has played a critical part in building an international rare disease community that is multi-disease, global, and diverse. It is united in its purpose to work towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Did you know?
- An estimated 30 million people are living with rare diseases in the 48 countries in Europe. [1]
- Each rare disease affects less than 1 in 2,000 people. [1]
- Approximately 85% of rare diseases affect fewer than one individual in a million or fewer than 500 people in the European Union. [3]
- 75% of rare diseases affect children. [1]
- 70% of rare diseases have their onset during childhood. [1]
- 72% of rare diseases are of genetic origin. [1]
- 28% of rare diseases are of non-genetic origin (these include rare cancers, rare infections, immune deficiencies, and health hazards). [1]
- 5 years on average is the time it takes for a rare disease patient to get a diagnosis. [2]
- 70% of people with rare diseases wait more than 1 year to get a confirmed diagnosis after coming to medical attention. [2]
- 7 in 10 people live with rare diseases and family carers reduce or stop professional activity due to their or their family member’s rare disease.[4]
- There are over 230 orphan medicines authorized in the EU. The goal is to support the development of 1,000 new therapies for rare diseases by 2030.[5]
- Only 1,200 out of all rare diseases have more than five documented cases published in the scientific literature. [4]
- Two-thirds of family carers spend more than 2 hours a day on disease-related tasks. [4]
- The proportion of people with rare diseases who report feeling depressed is 3 times higher than that of the general population. [4]
The Watts Family - daughter Avery Watts was diagnosed with HoFH when she was 6.
Issues that affect all people with a rare disease
- The lack of scientific knowledge and quality information on the disease often leads to delays in diagnosis.
- The need for appropriate, quality healthcare contributes to inequalities and difficulties in accessing treatment and care. This often results in significant social and financial burdens on patients.
- Due to the wide diversity of disorders and relatively common symptoms that can mask underlying rare diseases, initial misdiagnosis is common. Moreover, symptoms not only vary from one disease to another but also among patients suffering from the same disease.
- Research should be international to ensure that experts, researchers, and clinicians are interconnected.
- There is a substantial emotional, mental, physical, social, and economic burden caused by the condition.
Follow our social media campaign – share with your networks tagging @FHEF and @EURORDIS with the following statement:
I support #HoFH and #FCS this #RareDiseaseDay
- Social Media campaign Starting February 1st
- Announcement of the first annual HoFH Awareness Day – 4th May 2024
- Europe Rare Disease Summit hosted by Bamberg Health Feb 14th, speakers include Magdalena Daccord (CEO) and Jill Prawer (Rare Diseases Project Manager)
- A dedicated webinar on March 7th: Make it or Break it: Communication in Rare Diseases (register here)
- Share your events with us
Other activities you can get involved in can be found on the dedicated Rare Disease page of EURORDIS.
Sources and References
- https://www.eurordis.org/information-support/what-is-a-rare-disease/
- Rare Barometer Diagnosis Survey. Available soon
- Nguengang Wakap, S., Lambert, D.M., Olry, A. et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet 28, 165–173 (2020).
- Juggling care and daily life: the balancing act of the rare disease community
- https://irdirc.org/resources-2/rd-metrics/ and EURORDIS therapeutic reports[5] (2020) Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database, European Journal of Human Genetics: https://www.nature.com/articles/s41431-019-0508-0
Date: 14 February 2024
Location: In-person event in Madrid, Spain (Venue: Hotel ILUNION Pío XII)
Mark your calendars for the Europe Rare Disease Summit 2024, hosted by Bamberg Health on February 14 in Madrid. FH Europe Foundation has been invited to participate as an institutional collaborator and our CEO Magdalena Daccord, and Rare Diseases Project Manager, Jill Prawer, are among over 45 speakers, that will be addressing different topics over the day and will encompass government plans, access and financing, clinical research and innovation, artificial intelligence, and data.
Joining forces from all corners of Europe, this prestigious event brings together leading researchers, healthcare professionals, patient advocates, policymakers, industry experts, and rare disease patients and families with the aim to:
- Empower Patients: Putting patients at the heart of our efforts, we strive to enhance their access to quality care and support, while advocating for their rights and unique challenges.
- Advance Research: Renowned scientists will present groundbreaking discoveries, fostering cross-disciplinary collaboration to propel rare disease research forward.
- Build Collaborative Networks: A platform for stakeholders to connect, exchange ideas, and form strategic partnerships, bridging gaps in research, treatment, and support.
- Influence Policy: Seeking to drive positive changes and better support the rare disease community by engaging policymakers.
Tailored for rare disease advocates, healthcare professionals, industry leaders, and more, the summit is a hub for knowledge exchange and networking.
The event will include dynamic lineup of keynote speeches, interactive workshops, panel discussions and networking opportunities. Opportunity to share experiences, learn from experts, and inspire change.
The summit is free for patients and network members, and others can attend at no cost with an invitation from the FH Europe Foundation. You will find the invite and more information here.
Don't miss this opportunity to be part of a pivotal dialogue shaping the future of healthcare.
