This week, ahead of Rare Disease Day on 28 February, ELF is giving patients a platform to share their stories, challenges and insights about living with rare lung diseases.
Rare Disease Day is a global event organised by EURORIS. It aims to amplify the voices of the 300 million people living with a rare disease. The campaign uses #ShareYourColours to encourage everyone to show their support for those living with rare conditions.
ELF is proud to stand alongside people living with rare lung diseases. We are committed to raising awareness and improving for all respiratory conditions, including pulmonary fibrosis (PF), pulmonary hypertension (PH), bronchiectasis, sarcoidosis and aspergillosis.
We have asked members of our rare disease Patient Advisory Groups (PAGs) to share their insights on what it is like to live with a rare condition and why it is important for patients to have a platform to share their experiences and work towards better care.
“Your involvement in advocacy matters. By sharing your insights, you can help guide researchers and healthcare professionals to focus on what truly matters for patients, ensuring that new treatments and studies align with real-world needs.” – Louise Bouman, Pulmonary Hypertension (PH) PAG
To better understand the challenges and experiences of those living with rare lung conditions, we asked our PAG members to share their reality of living with a rare disease. Their insights offer a deeper understanding of the daily struggles, emotional impact and patient journey.
"Living with a rare disease means facing daily challenges that are often invisible to others - from unpredictable symptoms and medical obstacles, to feeling isolated in a world that it doesn’t understand… Yet, despite everything it is also a journey of incredible strength, resilience and the fight for a better quality of life, where every small step becomes a victory."
“Living with a rare disease is a bit like being an alien among humans. People living without a rare condition don't have the same daily experiences and often do not understand how these diseases can affect you. They are often bewildered when you present yourself as you naturally are.”
"I live in Bulgaria where access to pulmonary hypertension therapies is limited and there is no lung transplant programme. This has been challenging but despite these obstacles, I have been fortunate to live a fulfilling life for the past nine years with new lungs. This journey has underscored the critical need to raise awareness and increase resources for rare disease patients worldwide.”
“Living with a rare disease can be challenging, but I choose to focus on meaning and purpose. By engaging in PH-related work and helping others, I not only support fellow patients but also find fulfilment and strength in the process.”
“Living with a rare condition is an odyssey. You have to do lots of research to find ways that help you maintain your fragile health condition and ease the symptoms of your disease. You soon learn that it is very valuable to use the help and knowledge from other patients."
“In addition to dealing with the symptoms and daily struggles that come with having a rare disease, you also have to take on a second job. You have to become a medical expert and learn how to advocate for yourself with healthcare professionals, insurance companies and medical equipment providers."
Raising awareness of rare diseases is an important step to ensure that people living with these conditions are heard. It brings attention to the unique challenges they face, from delayed diagnoses to limited treatment options.
When we create communities like our PAGs, we create a space for learning and a collective voice for change.
“We must overcome lung conditions like sarcoidosis with strength and courage and stand together in our fight for better lung health. Together, we can raise awareness of the challenges that come from having a rare condition.”
“It is important to raise awareness of rare diseases so that patients may get diagnosed correctly in a timely manner. This will help patients feel less isolated and know where to turn for reliable sources of information.”
“Raising awareness of rare diseases is crucial because early diagnosis can save lives. When both doctors and the public recognise the symptoms, patients can get the treatment they need sooner.”
“We must work together to raise awareness of rare diseases as not everyone is capable of advocating for themselves. It can also be extremely difficult for patients to do this when feeling unwell.”
“We can all fight against rare diseases, but the opportunities for this fight are different in each country. Raising awareness is the key to change – by implementing better policies in Eastern Europe, we can improve the outlook and quality of life for patients with rare diseases.”
Being part of a PAG allows patients to shape the future of research, treatment and care for their condition. ELF helps patients work closely alongside members of the European Respiratory Society (ERS), healthcare professionals, researchers and clinicians. These relationships mean that we can continue to work together and advance care for rare lung diseases. Hear from our PAG members about how their involvement is creating change for patients across Europe.
"In a PAG, patients can share their experiences of disease with one another and professionals and this can help make sure future research stays relevant. This amazing collaboration leads to a deeper knowledge of the illness and helps us to understand how we can cope more effectively as patients. It is inspiring that so many patients volunteer their time to fight for better health, in spite of their challenges."
"Getting involved in a PAG is an important way to make sure the patient perspective is included in research, policy and healthcare decisions. By sharing your experiences, you can help to ensure new treatments align with real-world needs and contribute to increased understanding and improved outcomes for people living with the condition.
Being part of a Patient Advisory Group also allows you to connect with other patients, exchange knowledge, and become a stronger voice in the PH community."
“Patient Advisory Groups are a fantastic opportunity to help drive research and make sure the patient voice is heard when developing new guidelines for treatments. They are also vital to increase awareness of your condition to the general public, clinicians and patients."
By learning from each other’s experiences, we can help to support one another and drive positive changes for lung health. Let us continue to make sure lung patients across Europe can get the care they need, when they need it.
If you are living with a lung condition and interested in contributing to better lung health, learn more about our Patient Advisory Groups (PAGs) and how to get involved.
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