What makes a condition classify as rare?

  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

  • A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

  • With over 7000 rare conditions identified, rare diseases don’t only affect the person diagnosed – they also impact families, friends, caretakers and society as a whole. Rare conditions affect more than 300 million people worldwide; with 50% of those affected being children.

  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

  • Rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. However, relatively common symptoms often hide underlying rare diseases leading to misdiagnosis and delays in treatment.

People with rare conditions share common issues:

  • Lack of access to correct diagnosis.

  • Delay in diagnosis

  • Lack of quality information on the disease

  • Lack of scientific knowledge of the disease

  • Heavy social consequences for patients

  • Lack of appropriate quality health care

  • Inequities and difficulties in access to treatment and care

The Rare Disease Experience

Most rare conditions are chronic, progressive, degenerative and life-threatening. The fact that 95% of rare conditions don't have an FDA approved treatment option adds to the high level of pain and suffering endured by several patients and their families.

 

The lack of scientific knowledge and quality information on rare conditions often result in a delay in diagnosis. On average it takes 7 years to receive an accurate rare disease diagnosis. Additionally, the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care for the rare disease community. This often results in heavy social and financial burdens on patients and their caregivers.

Although rare disease patients and their families face many challenges, enormous progress is being made every day. The rare disease community is rich with passionate people dedicated to patient advocacy diligently working to advance clinical and scientific research that will lead to the development of therapeutic options and potential cures.

Blaze Therapeutics is dedicated to supporting the rare disease community through our R&D efforts to pursue the treatment of a rare disease indication with a cannabis based product. Blaze Therapeutics is currently exploring different rare disease indications for therapeutic product development to ultimately enter into the clinical trial development phase in the pursuit of FDA approval. If you would like to learn more about our efforts, please feel free to contact us.

Blaze Therapeutics is happy to be a member of the Global Genes Corporate Alliance. Global Genes is a wealth of resources for the rare disease community. Blaze Therapeutics' CEO, Dr. Bodkin is also a member of the Rare Advocacy Movement (RAM). 

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