Rare disease day 2023: putting a spotlight on rare conditions

On 28^th February, Rare Disease Day will raise awareness of and generate change for the 300 million people worldwide who live with a rare disease.

Examples of rare lung diseases include alpha-1 antitrypsin deficiency, lymphangioleiomyomatosis (LAM), idiopathic pulmonary fibrosis (IPF), bronchiectasis and sarcoidosis, and there are many more.

This year, Rare Disease Day will focus on equity. Everyone deserves equitable opportunities and access to healthcare but people living with a rare disease are more likely to experience treatment inequality, misdiagnosis and isolation.

How does ELF support rare lung diseases?

ELF supports Rare Disease Day and works all year round on a number of activities and projects supporting people with rare lung diseases. This includes collaborating with a number of organisations working in this area, including EU-PF, PAH Europe CF Europe – to name a few.

We have a number of Patient Advisory Groups working in rare disease areas who provide feedback and personal experiences to help improve treatment and healthcare. Our childhood bronchiectasis PAG is currently recruiting for new members. If you are a parent of a child with bronchiectasis, contact us to learn more and find out how you can get involved: info@europeanlung.org.

A number of people from our patient network have also shared their experiences of living with a rare disease. You can browse these videos and testimonials here.

You can also read more about symptoms, diagnosis and treatments for rare lung diseases in our information hub:

• Rare and orphan lung diseases
• Children’s interstitial lung disease
• Idiopathic Pulmonary Fibrosis
• Lymphangioleiomyomatosis (LAM)
• Rare lung cancers
• Bronchiectasis
• Sarcoidosis
• Alpha-1 antitrypsin deficiency

If you have any queries or would like further information from us on rare lung diseases, please get in touch: info@europeanlung.org.

What is happening during the campaign this year?

For #RareDiseaseDay 2023 the campaign is encouraging people across the globe to ‘light up’ in solidarity. You can support the #LightUpforRare campaign by illuminating your home or a monument in your city or share your photos, videos and experiences to help build awareness.

Over 6000 different rare diseases have been identified to date. Due to the low prevalence of each disease:

• medical expertise is rare
• knowledge is scarce
• care is inadequate
• research is limited, and
• patients can struggle to get a diagnosis, receive treatment and benefit from research.

Held on the last day of February each year, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008.

Find out more about the campaign