Resources

When a patient is diagnosed with a rare or ultra-rare disease, having a support system can be as important as having the right physician and treatment plan. There are several groups and resources to which a patient can turn, including:

  • European Organisation for Rare Diseases (EURORDIS) is dedicated to helping people with rare diseases and assisting the organisations that serve them.
  • Global Genes | RARE Project is a non-profit organisation that promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon.
  • Orphanet is a database of information on rare diseases and orphan drugs for the public. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases.
  • Rare Disease Communities is a social networking site sponsored by EURORDIS and NORD (National Organisation for Rare Disorders) to help patients and families connect with and support each other and share vital experiences of living with a rare disease.

Additionally, patients and physicians can utilize the resources below to learn more about complement, PNH and aHUS:

  • Academy for Complement Inhibitions (ACI) is a scientific and educational resource intended for a global audience of healthcare professionals outside the US with an interest in complement dysregulation syndromes.
  • aHUS Source contains reliable information about atypical Haemolytic Uraemic Syndrome (aHUS), a chronic, life-threatening disease.
  • PNH Source contains reliable information about paroxysmal nocturnal haemoglobinuria (PNH), a chronic, life-threatening disease.