Rare diseases, but not invisible: let's build the future together in the FIMARP webinar on 28 February

Dear patients, family members and colleagues,

World Rare Disease Day is not just a date on the calendar. For those of us who work in hospital wards and research laboratories, and above all for those of you who deal with the daily reality of disease, it is a time to reiterate a fundamental concept: rare does not mean alone.

It is in this spirit that I was delighted to accept the invitation from FIMARP ETS to participate in the national webinar to be held on 28 February, entitled: “Rare Lung Diseases: understanding, treating and building the future together”.

Why is this meeting important? Often, when you receive a complex diagnosis such as idiopathic pulmonary fibrosis (IPF) or other interstitial lung diseases, you feel disoriented. Medicine is making great strides, but technology and drugs alone are not enough. You need clear information, you need to know who to turn to and, above all, you need to talk to others.

I will not be alone in this webinar. I have the honour of discussing the issue with some of Italy's leading experts, esteemed colleagues such as Professors Poletti, Vancheri, Luppi, Bocchino, Lacedonia and Dell'Amore. Together, we will cover the entire country, from north to south, to bring the answers you are looking for to your homes.

What will we talk about? We have structured the morning to cover all the crucial points of the treatment pathway:

• Diagnosis: The importance of early and accurate diagnosis, thanks to multidisciplinary teams.
• Therapies: We will take stock of anti-fibrotic drugs, their management and the personalisation of treatment.
• Daily life: Because treating the disease also means taking care of the patient's quality of life, managing comorbidities and rehabilitation.
• The future: We will talk about research, new clinical trials and the concrete prospects that await us, including the delicate but fundamental issue of lung transplantation.

But the part I care about most is the dialogue. FIMARP wanted this event to give you a live voice, because modern medicine is based on listening and sharing.

I look forward to seeing you online to turn this awareness day into a concrete moment of hope and knowledge.

Details for participation:

📅 Date: 28 February

🕤 Time: 09:30 – 11:30

💻 Platform: Google Meet (Online)

🎟️ Free participation

🔗 Link to connect: Click here to participate

Do not miss it. Let us build the future together.