Conectando Las Rayas / Comunidad Ehlers-Danlos Latam & Ecuador
Guayaquil, Guayas, Ecuador
About this Group
We are a Spanish-speaking community initiative, Conectando las rayas / Ehlers Danlos LATAM , based in Ecuador and supporting individuals living with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), with a growing network that also reaches other Spanish-speaking patients.
Our mission is to provide a safe and supportive space while actively working to improve access to diagnosis, education, and specialized care.
In Ecuador and much of Latin America, limited awareness and resources often lead to delayed diagnoses, misdiagnosis, and lack of appropriate medical support.
Beyond peer support, Conectando las rayas / Ehlers Danlos LATAM focuses on:
- Facilitating access to genetic testing and specialized medical services through strategic partnerships.
- Connecting patients with healthcare professionals familiar with EDS and related conditions.
- Promoting education through community-based and international collaborations.
- Supporting initiatives that aim to improve recognition, care pathways, and patient advocacy.
We also collaborate with leaders and patient communities in other countries, allowing us to guide individuals toward resources, support networks, and information that are more relevant to their local context. We aim to bridge the gap between patients, healthcare providers, and available resources, contributing to a more informed, connected, and empowered community.
Meeting Schedule
Our community operates through ongoing support via a private WhatsApp group, where members can engage in guided discussions focused on diagnosis, comorbidities, and shared experiences in a safe and structured environment. In addition, we are in the process of implementing periodic virtual sessions, including educational talks, expert-led discussions, and community support meetings.
These sessions are planned to take place on a monthly basis, depending on availability and community needs.
As the community grows, we aim to establish a more structured schedule of regular meetings and educational activities to further support our members.
- Support Group
- This group holds virtual meetings
- This group holds in-person support groups
- This group holds virtual support groups
Services
Patient Support & Guidance / Diagnosis & Resource Navigation
We provide a virtual support space where individuals can connect, share experiences, and receive guidance related to Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and their associated comorbidities.
Beyond peer support, we help individuals navigate the diagnostic process and connect with specialized resources and healthcare professionals, primarily in Ecuador and Latin America.
Education / Awareness
We aim to raise awareness and provide educational resources about Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and their associated comorbidities. Our goal is to empower individuals with reliable information, promote early recognition, and improve understanding of these conditions within the community.
Family and Caregiver Support
We provide support and guidance for family members and caregivers of individuals living with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). Our goal is to help them better understand these conditions, offer emotional support, and equip them with tools to care for their loved ones with empathy and confidence.
