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 organizations 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 organizations. We are committed to apply these insights to our programs 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 nizubaglustat, and to provide information about our ongoing PRONTO study. Please click on the links below to watch these videos.
Patient organizations GM2 Gangliosidosis
- 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 Niemann-Pick Assocation
- Netherlands – Vereniging Ouders en Kinderen met stofwisselingsziekten-VKS
- Portugal – DOCE
- Spain – ACTAYS- Accion Y Cura Para Tay-Sachs
- United Kingdom – CATS Foundation
- United States – NTSAD
Niemann-Pick Associations
- Argentina – Niemann-Pick Argentina
- Australia – Australian NPC Disease Foundation Inc
- Brazil – Fundadora da Niemann Pick B-RS en outras doencas raras
- Brazil – Casa Hunter – Brazilian Association of Carriers of Hunter and Other Rare or Serious Diseases
- Brazil – Brazilian Federation of Rare Disease Associations (FEBRARARAS)
- Brazil – Casa dos Raras
- France – Vancre les Maladies Lysosomales (VML)
- International – International Niemann Pick Alliance (INPDA)
- Italy – The Italian Association Niemann Pick and related diseases Onlus (AINP)
- Netherlands – Volwassenen Kinderen met Stofwisselingsziekten (VKS)
- Spain – Fundacion Niemannpick de Espania
- Turkey – MPS deniglu
- United Kingdom – Niemann-Pick UK (NPUK)
- United States – National Niemann-Pick Foundation (NNPDF)