Patient Resources and Organizations

Patient Resources and Organizations

Patient Resources and Patient Organizations we collaborate with

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 value highly the important work of patient-focused organisations and communities. Through close collaborations and partnerships, our goal is to understand patients’ needs, support the patient community and maintain a close and regular dialogue with patient organisations. We are committed to apply these insights to our programmes and activities.

With the help of patients, patient families, physicians, and partner companies, we have created several videos to encourage a better understanding of these diseases, our lead program AZ-3102, and to provide information about our ongoing PRONTO study. Please click on the links below to watch these videos.

Patient Resources and Organizations
Canadian MPS Society
The Cure GM1 Foundation
Cure Tay-Sachs
NTSAD - National Tay-Sachs & Allied Diseases Assocation
DOCE - Divulgar Orientar Para Com Bater e Enfrentar a Tay-Sachs GM1 e Sandhoff
ACTAYS - Accion Y Cura Para Tay-Sachs
Italian GM1 Assocation
Associazone Italiana Niemann Pick e Malattie Affini ONLUS
VML - Vaincre les Maladies Lysosomales
CATS Foundation - Cure & Action for Tay-Sachs Foundation
Hand in Hand gegen Tay-Sachs
Vereniging Ouders en Kinderen met stofwisselingsziekten-VKS
Rare Find Foundation
-Niemann-Pick Argentina
-Australian NPC Disease Foundation Inc
-Casa Hunter – Brazilian Association of Carriers of Hunter and Other Rare or Serious Diseases
-Brazilian Federation of Rare Disease Associations (FEBRARARAS)
-Casa dos Raras
-Fundadora da Niemann Pick B-RS en outras doencas raras
-Vancre les Maladies Lysosomales (VML)
-The Italian Association Niemann Pick and related diseases Onlus (AINP)
-Volwassenen Kinderen met Stofwisselingsziekten (VKS)
-Fundacion Niemannpick de Espania
-MPS deniglu
-National Niemann-Pick Association
-Niemann Pick UK (NPUK)