ABOUT US

We are an Association of Patients with Fibromuscular Dysplasia (FMD) and Spontaneous Coronary Artery Dissection (SCAD).

We were born out of the need to meet, support each other, and work together to give visibility to these two diseases. More support, better resources, and more research.

MISSION

Our Association is a non-profit organization whose purpose is to improve the diagnosis, treatment, and quality of life of patients with FMD and/or SCAD.

Our goal is to raise awareness, provide visibility for FMD and SCAD, and promote research. We provide support, information, and training to patients and healthcare professionals.

We work to inspire and facilitate collaboration between national and international patient organizations, scientific societies, and healthcare centers.

We accompany people affected by FMD and SCAD from the moment of diagnosis, offering them reliable information, emotional support, and a community where they can feel understood.

We work to give visibility to these diseases, bring patients and healthcare professionals closer together, and create a network of experts with clinical and research experience interested in FMD and SCAD.

VISION

To create a future where no patient with SCAD or FMD in Spain takes years to receive a diagnosis, feels alone, or has to search for information in another language.

We aspire to be the national benchmark that transforms the future of patients with SCAD and FMD, fostering collaboration between healthcare centers, driving research, and ensuring a support network that eliminates uncertainty and fosters hope.

We want to be a cohesive community with effective participation.

Our values

Mutual support ❤️‍🩹🤗

Trust 🫂 🤝

Inclusion 🌍 🤲

Objectives

The DFM SCAD patient association aims to inform and educate patients (the vast majority of whom are women) and their families, and to offer support and emotional accompaniment. We defend their rights to ensure access to quality healthcare and appropriate treatments, and promote medical research with a gender perspective to improve disease management and avoid unnecessary complications and risks. All this with the goal of improving the quality of life for women affected by FMD, SCAD, or both.

1. Information and education:

Inform patients and their families about the disease, its diagnostic techniques, treatments, and prevention of complications.
Facilitate therapeutic education and self-care so that patients can better manage their condition.
Raise awareness about the lack of specific research on women and promote studies with a gender perspective.

2. Support and accompaniment:

Offer emotional and psychological support to those affected and their loved ones, empathizing with their experience from a feminist and humanized perspective.
Create safe spaces for meeting to share experiences, strengthen support networks, and empower patients in the face of the disease.

3. Advocacy and representation:

Defend access to adequate, specialized, and accessible medical care for all.
Promote the active participation of patients in clinical decision-making.
Represent patients in healthcare, socio-labor, and political spheres, highlighting structural health, diagnostic, and treatment inequalities that affect women.

4. Health promotion and research:

Public outreach regarding FMD and SCAD: raise awareness among the general public about potential causes, risks, and complications. Focus on the fact that these pathologies have a higher incidence in women, emphasizing prevention and health promotion, and improving quality of life as much as possible.
Activities and/or awareness campaigns in which the public can participate.
Support scientific research with a gender perspective to find more effective and personalized treatments.
Promote disease prevention and healthy lifestyle habits, considering biological and social differences between sexes.

5. Improvement of quality of life:

Contribute to improving the quality of life of patients and their families.
Normalize the image of the disease in women, combating biases and stigmas.
Promote social recognition of these pathologies as diseases that primarily affect women and require specific attention.

Rodríguez Ortíz de Salazar

Begoña

President

Board

Andreu Martí

Alba

Vice President

García Cirugeda

Yolanda

FMD Vocal

Rodrigo Lorenzo

Isabel

SCAD Vocal