Let’s start the awareness month of Rare Diseases 2024!
February has started and ERN ReCONNET is very excited to be part of the global movement aimed at raising awareness of Rare Diseases!
A few numbers and facts to recall the current status quo of Rare Diseases. Let’s start…
- 30 MILLION people are living with a rare disease in 48 countries in Europe
- Each rare disease affects fewer than 1 in 2000 people.
- THERE ARE OVER 6000 distinct rare diseases
- Rare diseases affect about 4% of the population during their lifetime with estimates ranging from 3.5% to 5.9%.
- Approximately 85% of rare diseases affect fewer than one individual in a million, or fewer than 500 individuals in the European Union
- 75% of rare diseases affect children, 70% of rare diseases have their onset during childhood
- 72% are of genetic origin, 28% are non-genetic including rare cancers, rare infections, immune deficiencies & health hazards
- 5 YEARS is the time it takes on average for rare disease patients to get a diagnosis
- 70% of people with rare diseases wait more than 1 year to get a confirmed diagnosis after coming to medical attention
- ONLY 1,200 out of all rare diseases, have more than five documented cases published in the scientific literature
- 2/3 OF FAMILY CARERS spend more than 2 hours a day on disease-related tasks
- The proportion of people with rare diseases who report FEELING DEPRESSED is 3 TIMES HIGHER than that of the general population
Those numbers and statistics talk loud on the unmet needs still present and on the amount of work that needs to be done to provide proper answers, care, and support to this community.
In 2008, EURORDIS and 65+ national alliance patient organisation partners set up and is coordinated the Rare Disease Day, a globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since then it has played a critical part in building an international rare disease community that is multi-disease, global, and diverse, but united in purpose. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year, providing an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
ERN ReCONNET is strongly committed to do its part and being a key player on contributing to improving the field of rCTDs, for example by generating new knowledge and sharing the existing one and developing new contents, initiatives, actions, and activities carried out with patient representatives (ePAGs) and constantly addressing the unmet needs of the community.
The ERN ReCONNET ePAGs Advocates are the voice of rare/complex patients, they work together with the Network clinicians and Coordination Team to develop every action, activity, and initiative aimed at supporting patients and their families and, at the same time, at facilitating the communication between them and the healthcare professionals. The ERN ReCONNET ePAGs representatives are part of the Steering Committee and they are chairs of our ERN ReCONNET Working Groups. They take part of our ERN ReCONNET webinars as speakers as well as moderators. ERN ReCONNET implements all its actions with patient representatives.
This month, we will be sharing some focuses on specific contents developed and delivered so far. Stay tuned and follow us on social media. Happy Rare Disease Awareness Month!
…more than just a Network!
Reference. The numbers enlisted here on Rare Diseases were taken from Eurordis, What is a rare disease