Do you have the communication skills needed for rare diseases?

These past few months have been quite a ride. Since I left my previous job, I didn’t have a moment to stop and think, “What’s next?” Instead, I jumped straight into action, working on several projects without much time for planning, just rolling up my sleeves and implementing ideas.
I’ve already shared some of these updates on my LinkedIn profile, but I’ve gathered them all here to see what’s been occupying my time and thoughts lately.
I’d love your support—feel free to share these articles with anyone interested in patient advocacy.

🧭 If you’re a patient interested in Clinical Trials

A new clinical trial map offers a simple, patient-friendly dashboard for locating clinical trials across Europe. For instance, here’s a link showing all the European sites researching Langerhans Cell Histiocytosis.
✨ You can search for ongoing trials by location and medical condition. 

📌 Don’t miss my post from March to learn more about this helpful tool.

📢 Three Key Steps to Building Awareness through Strategic Communication

What do patient organizations and large companies have in common? They both need to build awareness, not just by spreading messages but by making a lasting impact.
From my experience working in both sectors, I’ve identified three essential steps to ensure effective and meaningful communication strategies.
Would these strategies work for your initiatives? Check out the post, and let me know what you think.

🇪🇸 Hola, Madrid

I recently spoke about patient advocacy with Tamás Bereczky PhD Wafae IRAQI, and Lenka Součková.
My takeaway?
I’ve been applying what I’ve learned to strengthen collaborations between rare disease organizations and research partners, ensuring the patient voice is heard from the start of scientific work.
My training, primarily through the EUPATI Patient Expert Training, gave me the tools to improve communication, grow stronger networks, and contribute meaningfully to research discussions.
I also shared insights on the Rare and Share podcast, where we spotlight patient stories and raise awareness about life with rare diseases, making education more accessible for everyone.
Interested in becoming a Patient Expert through EUPATI? Here’s my story on their website.
🎉 I’ll be joining the Organizing Committee again in Madrid for the Final PETP event, where we’ll celebrate the Cohort 8 certification ceremony!

🧬 Does Your Gender Identity Fade When You Receive a Rare Disease Diagnosis?

One of the articles I wrote started as a conference abstract for a call on “Societal, Legal, Medical, and Artistic Discourses and Practices of Emerging Gender Identities.”

It wasn’t accepted—and that’s okay.
But this is still an important topic we need to discuss.
If you’re curious about this issue, read my article and share your thoughts.
💬 Have you come across any research or insights on this topic? I’d love to hear from you—there’s so little literature out there.

Working with Hrabriša - Lil` Brave One

We’ve been working hard, and the results are starting to show. One highlight is the visibility we’ve achieved for the rare neurotransmitter disease community.
Last week, we hosted the Rare Neurotransmitter Diseases Researchers Forum: "Connecting the Network—From Basic Research and Clinical Phenotypes to Patient Voice" in Zagreb.
Here’s who joined us:

▶ 28 Healthcare Professionals
▶ 17 Researchers
▶ 10 Patient Representatives

Participants came from Croatia, Serbia, Bulgaria, Slovenia, Italy, and Germany, with speakers from Switzerland and the U.S.

RND Researchers Forum, 16th May 2025, Zagreb (Croatia)

We were proud to organize this Forum in collaboration with the Croatian Paediatric Society’s Section for Metabolic Diseases.
💬 You can help too—share this with your network. It might reach a family currently navigating a neurotransmitter disease diagnosis, unaware of their rights and resources.

This is just a glimpse of what I’m working on right now. 

These topics are part of the bigger picture—how we build a stronger, more inclusive patient advocacy movement.
If you have any questions or want to keep following these efforts, subscribe to my blog and be part of the change.
💌 More updates coming soon!