Agreements

Agreement between AESCOV and The Ehlers-Danlos Society

The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education on Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). It supports the development of effective and equitable therapies for EDS and HSD and works collaboratively to improve the lives of those affected by these conditions.

https://www.ehlers-danlos.com/affiliate-and-support-group/aescov/

Agreement between AESCOV and Association Espoir de Noisette (Association of Vascular Compression Syndromes in France).

The French association Espoir de Noisette was created to support, inform, raise awareness, and contribute to improving the care and management of patients suffering from Nutcracker, Cockett/May-Turner, Wilkie, and Dunbar compression syndromes, including promoting medical research.

https://www.association-espoirdenoisette.org/

Agreement between AESCOV and ANSEDH

The National Association of Ehlers-Danlos Syndrome and Hypermobility is dedicated to stimulating and promoting scientific research on Ehlers-Danlos Syndrome and its consequences. It also seeks to raise awareness among the public and public and private institutions about the problems that this disease causes in affected individuals, families, and society.

https://www.ansedh.org/

Agreement between AESCOV and ORPHANET.

Orphanet is the reference information portal on rare diseases and orphan drugs, aimed at both professionals and patients. Its objective is to contribute to the improvement of the diagnosis, care, and treatment of those affected by these conditions. It was founded in France by INSERM in 1997, and its administrative offices are located in Paris. The Orphanet website allows searching for any rare disease through its name, implicated gene, coding in the ICD-11 (the WHO International Classification of Diseases manual), Orphanet nomenclature on rare diseases (ORPHA code), or the OMIM code (online catalog of human genes and genetic disorders). AESCOV is registered in Orphanet:

https://www.orpha.net/pl/patient-organisations/patient/662134?name=

Agreement between AESCOV and EURORDIS.

The European Organization for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases across Europe. EURORDIS is a non-governmental alliance driven by patient organizations and individuals active in the field of rare diseases in Europe. EURORDIS represents 695 rare disease patient organizations in 63 countries, covering over 4,000 rare diseases.

https://www.eurordis.org/es/

Agreement between AESCOV and SHG Bauchkompressionssyndrome Austria.

The Abdominal Compression Syndrome Platform in Austria is a contact point for patients with and without a diagnosis. Patients are accompanied part of the way: during or after diagnosis, mentally, by sharing experiences and by putting them in touch with doctors. For those who want it, they are also accompanied in the difficult times before and after the operation, drawing on the extensive personal experience and international exchanges with patients.

http://www.lebenskuenstlerin.at/index.php/de/

Agreement between AESCOV and Asociácia Vaskulárnych Kompresívnych Syndrómov a Ehlers-Danlos

The Slovak association Asociácia Vaskulárnych Kompresívnych Syndrómov a Ehlers-Danlos was created and is dedicated to supporting, informing, educating, and raising awareness about Vascular compression syndromes and Ehlers-Danlos syndrome in both patient and professional communities in Slovakia and Czech Republic, as well as internationally. In addition, it fosters research and advancements in patient care through setting up collaborative partnerships with medical professionals, scientists, and other patient organizations. Its ultimate vision is to improve the accessibility and quality of patient care, and thus the overall patient quality of life.

http://avks.sk/

Agreement between AESCOV and Superior Mesenteric Artery Syndrome

This organization promotes research for SMAS, educating about this rare disease, advocating for early diagnosis, and providing patient support. It is the only registered nonprofit organization for SMAS in the United States that provides financial assistance to patients.

https://www.smasyndrome.org/

Agreement between AESCOV and The National MALS Foundation (NMALSF)

The National MALS Foundation (NMALSF) is a nonprofit organization based in the United States of America, dedicated to the mission of providing hope and support (body, mind, spirit) to those suffering from the debilitating symptoms of Median Arcuate Ligament Syndrome (MALS) through advocacy, awareness, education and research within the clinical and mainstream communities.

https://www.malsfoundation.org/

SICOVAR - Group of Patients of Vascular Compression Syndromes of ARGENTINA

This group of Vascular Compressive Syndrome Patients from Argentina is self-managed to spread, raise awareness and accompany people who suffer from Pelvic Congestion, Nutcracker, Ovarian Vein, Wilkie, Median Arcuate Ligament, Thoracic Operculum and May Thurner syndromes.

SDTB, Notre Bataille

The French association of Thoracic Outlet Syndrome (TOS) or Thoracobrachial Outlet Syndrome SDTB, NOTRE BATAILLE is a non-profit organization that performs the functions of informing and helping patients who suffer from this vascular compressive syndrome as well as providing them with knowledge about this pathology and guide them to achieve a diagnosis and medical and care advice as soon as possible.

https://www.infos-sdtb.fr/fr/

SHARE4RARE (S4R)

Share4Rare (S4R) is an EU-funded collaborative research project involving 9 partners from 5 countries (Spain, Netherlands, Sweden, United Kingdom and Belgium) whose objective is to design and drive an online community focused on diseases rare, involving patients, caregivers, researchers, patient organizations and other interested parties. The main result of the project is a collective awareness platform in which families and professionals from around the world can engage and connect to find solutions to oncological and neuromuscular diseases, apply research that shares information and experiences and improve quality of life, the management and collection of scientific knowledge.

https://www.share4rare.org/

FEDER

FEDER is the Spanish organization that integrates patients with low prevalence diseases and represents their voice. FEDER, as one of the main patient platforms in Spain, has the mission of fighting for the rights and interests of those affected, in order to improve their hope and quality of life. Currently, FEDER is made up of more than 140 associations, represents more than 900 different diseases and, most importantly, acts on behalf of all patients (with or awaiting diagnosis) who suffer from one of these pathologies: 3 million affected in Spain. Founded in 1999, FEDER is a non-profit organization run entirely by affected people and their families (all members of its Board of Directors).

https://www.enfermedades-raras.org/

Agreement between AESCOV and Dr. Alfredo Santana Rodríguez

Dr. Alfredo Santana is a geneticist and researcher at CHUIMI in Las Palmas de Gran Canaria. Dr. Santana and his team are currently conducting a research study on the possible genetic causes of our pathologies in order to initiate research lines to find treatments. The study is structured in different phases, the first consists of inclusion in a patient database to later manage the sending of more information and blood samples.

https://drive.google.com/file/d/1NKX8meyC6LW4xzYtnMercpUUI3zjX5ir/view?usp=sharing

European University of Valencia

In May 2025, Dr. Borja Mercado, professor and researcher at the European University of Valencia (UEV), together with AESCOV, launched a statistical study with the main objective of quantifying the cases of Vascular Compression Syndromes in Spain and determining the coexistence with Ehlers-Danlos Syndrome. This study also aims to collect specific characteristics of patients, the diagnostic process, treatments and the impact these syndromes have on their lives.

https://docs.google.com/forms/d/e/1FAIpQLScac1NTXQNGGVXzZ8q1uHNJyPINxNv4xRcM0GHjSiUscCfvSg/viewform