Working with Patient Communities
We aim to keep these resources up to date to provide important information on supporting partners for patients, their families, and caregivers.
At Azafaros, we highly value the important work of patient-focused organizations and communities. Through close collaborations and partnerships, our goal is to understand patients’ needs, support the patient community and keep a close dialogue with patient organisations. We are committed to apply these insights to our programs and activities.
Patient organizations GM2 Gangliosidosis (including Tay-Sachs and Sandhoff disease)
• Australia – Rare Find Foundation
• Canada – Canadian MPS Society
• France – VML- Vaincre les Maladies Lysosomales
• Germany, Austria and Switzerland – Hand in Hand gegen Tay Sachs
• Italy – Italian Niemannpick association
• NL – Vereniging Ouders en Kinderen met stofwisselingsziekten-VKS
• Portugal – DOCE
• Spain – ACTAYS- Accion Y Cura Para Tay-Sachs
• UK – CATS Foundation
• US – NTSAD