Traveling can be exciting—but for individuals living with Erdheim-Chester Disease (ECD), it can also come with added considerations. Whether you’re attending your very first ECDGA Patient & Family Gathering or returning to reconnect with the community, preparing thoughtfully can make your journey smoother, more comfortable, and less stressful.

This year’s Gathering takes place in Barcelona, Spain, on May 26, 2025, at the Bellvitge University Hospital. To help you feel ready and relaxed, we’ve gathered tips that blend practicality and compassion—because traveling with a rare disease should feel empowering, not overwhelming.

1. Plan Ahead—Especially When It Comes to Medical Needs

Before you even unzip that suitcase, make sure your medical and travel essentials are in order:

• Bring copies of medical records, recent test results, and a list of medications with dosages.
• Pack all medications in your carry-on—with extra doses in case of delays. Include a letter from your doctor if you’re carrying needles, syringes, or controlled medications.
• Know where to go in case of emergency. Research the location of the nearest hospital or urgent care center to your hotel.

If you’re flying internationally, check airline policies around medical accommodations—some allow early boarding or offer wheelchair assistance. If you need extra support, don’t hesitate to request it.

2. Comfort First: Smart Clothing & Footwear

Barcelona in late May typically offers warm, sunny weather with temperatures averaging between 60–75°F (16–24°C). Think light layers and breathable fabrics.

Essentials include:

• Comfortable walking shoes (many streets are cobblestone!)
• A lightweight jacket or sweater for cooler meeting rooms or evenings
• A hat and sunglasses for the daytime sun
• Travel compression socks if you’re prone to swelling or flying long hours

If fatigue is an issue, remember it’s okay to dress for you—whether that means sneakers instead of sandals or an outfit that makes airport security simpler.

3. Create a “Wellness Travel Kit”

This small, dedicated pouch can include:

• Medications and supplements
• Snacks that fit your dietary needs
• Hand sanitizer, tissues, and sanitizing wipes
• Reusable water bottle (stay hydrated!)
• Noise-canceling headphones, sleep mask, or soothing music for stress relief
• A small notepad to jot down questions for speakers or jot quick thoughts

Feeling prepared can ease travel anxiety and help you focus on connecting once you arrive.

4. Give Yourself Permission to Rest

Travel takes energy—and so does attending a full day of programming. Be sure to:

• Schedule breaks between activities.
• Prioritize sessions that matter most to you.
• Let others know if you need quiet time or rest.

The ECDGA event is designed with compassion in mind. You’ll be surrounded by people who understand what it means to navigate ECD. There is no pressure to do it all.

5. Traveling with Support? Share the Plan

If a caregiver, friend, or family member is coming with you, review the itinerary together and talk through your needs—whether it’s meal planning, medication reminders, or just moral support. The Gathering is as much for caregivers as it is for patients, and attending together can be a meaningful shared experience.

6. Stay Connected with the ECDGA Team

Should questions arise as your trip nears, or if you need help finding travel-friendly information, the ECDGA team is here for you. We want every attendee to feel safe, supported, and seen throughout the event.

If you’re joining us in Barcelona, we can’t wait to welcome you. This annual Gathering is more than an event—it’s a moment to share stories, find hope, and feel less alone.

Ready to Pack?

Barcelona awaits with warm breezes, meaningful conversation, and a chance to reconnect—with others and yourself. Pack your bags with care, and bring your whole self—however that looks today.

We’ll see you there.

The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.