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ECD Patient & Family Gatherings

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Part of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of a Patient and Family Gathering (PFG) is to unite patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester disease.

The PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medicalprofessionals who have experience in caring for ECD patients and who are doing research in the field. The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.

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ANNUAL INTERNATIONAL PATIENT & FAMILY GATHERING

May 26, 2025 | Barcelona, Spain

Overview

The ECD Global Alliance 2025 Patient & Family Gathering will take place at the Renaissance Barcelona Fira Hotel on May 26. This meeting will bring together patients, family members, carers, clinicians, researchers, and members of support organizations to share knowledge and experiences related to ECD diagnosis, treatment, daily living. There will be time for learning, time for sharing, and time for connecting with others who have been affected by ECD. We hope it will be a time for all to become better informed and find increased hope for the future.

Schedule of Events

Monday, May 26, 2025.

8:00 am-8:30 am Registration & Continental Breakfast
Enjoy a light breakfast with others and prepare for an informational day full of hope.

8:30 am-4:40 pm Patient & Family Gathering
Spend the day learning more about ECD from medical professionals, patients, and others.

6:00 pm-8:00 pm Celebration Evening
Spend time with patients, family members, friends, and medical professionals for an evening of hope and celebration.

Who attends?

The event is open to the entire ECD community of patients, carers, family members, and ECD medical professionals. Please feel free to invite your family, friends, and members of your medical team.

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Host

Xavier Solanich, MD, PhD is this year’s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients, he attends to patients with other rare diseases such as Rosai-Dorfman, primary immunodeficiencies, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases, mainly systemic vasculitis, periaortitis / retroperitoneal fibrosis, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis, immune / ischemic optic neuritis, and orbital pseudotumor…

Dr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases, immunodeficiencies, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator, obtaining competitive public funding. As a result of his research, he is the author of several articles published in indexed scientific journals.

Agenda

A detailed agenda will be available before the conference.

Hotel

A room block has been set up for the Patient & Family Gathering at –

The Renaissance Barcelona Fira Hotel
Plaza Europa, 50-52, L’Hospitalet de Llobregat,
Barcelona, Spain, 08902

Please make your reservations using the link below before the hotel deadline.

Book your group rate for ECD Global Alliance Conference

Group Room Rate: Single: 240 Euro/night; Double: 260 Euro/night
Hotel reservation deadline: April 21, 2025

Travel

Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include:

• Subway. Metro line L9 Sud connects the airport terminals T1 and T2 with the Renaissance Barcelona Fira Hotel. The hotel metro station is Europa Fira. The metro operates daily between 5 am and midnight.
• Private Transfer. The hotel website states that private transfer is available for 101 Euro (one way) on request.

Scholarship Help

We have a limited number of scholarships available if a patient/family member would be unable to attend due to financial reasons. If a scholarship is needed, please contact the ECDGA at support@Erdheim-Chester.org as early as possible. You will need to include your name, email address, position in the community (patient, caregiver, family member), and a statement of your need. We will let everyone know what help we can provide by the end of February.

Awareness Nomination Opportunity

You are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. Submit a Mark Heaney Award nomination to honor the medical professional you believe has improved the lives of ECD patients by bringing awareness to ECD within the medical profession. Nominate anyone (patient, caregiver, medical professional, friend, etc.)who has volunteered their time to help improve the lives of all of those impacted by ECD. The award recipient will be announced at the ECD Celebration Evening on May 26.

Attendee Experiences

“We are all in the same boat, and our journey will be better together.” – Susan Anderson, ECD Family

“I have been in health care for over 20 years and have never seen or experienced such a caring and devoted group of health care professionals and volunteers!” – ECD Patient in Attendance

“I know they can’t give me a cure, or even answer all of my questions, but just knowing they are here for me, and they are listening, and they understand what I’m going through, that’s what I needed.” – ECD Patient in Attendance