Expert Tips and Collaborative Creations
Pathways To Trust is a nonprofit organisation dedicated to elevating the voices of people with rare diseases, ensuring their needs and experiences are heard and addressed in the healthcare system.Their core belief: once patients with rare diseases are included in conversations about care, much of the bias, misunderstanding and neglect they face can be overcome.
They create disease-specific educational programmes for medical students, healthcare providers and patients, developed by patients and patient advocates themselves.By bringing together patients, caregivers, clinicians, health-systems, industry stakeholders, and advocacy voices, they aim to build trust and drive patient-centered, empathetic, and effective care.
It is a nonprofit organisation dedicated to supporting people with Ehlers-Danlos Syndrome (EDS), their caregivers, and health-care professionals. It started in 2011, when the president and his daughter created the awareness program to help those affected by EDS.
The organisation aims to increase understanding of EDS — among patients, the general public, and medical communities — and improve quality of life for those affected and their support networks.
The Connective Tissue Coalition is a nonprofit organisation supporting people with connective-tissue disorders such as Ehlers-Danlos Syndrome (EDS), Marfan Syndrome, and Loeys-Dietz Syndrome. Their mission is to drive research, raise awareness, and provide resources to individuals and families affected by these conditions.
They fund and support scientific research via a grant programme — providing seed funding for studies into connective-tissue disorders.
They offer resources, education, and support for patients and their caregivers, including information about diagnoses, related conditions, support groups, and disability eligibility.
They facilitate community support, advocacy, and general awareness campaigns to improve care, understanding, and early diagnosis for these syndromes.
Connective Tissue Coalition | Ehlers-Danlos Syndrome