RARE DISEASE INSIGHTS

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:

  • A long diagnostic journey

  • Several misdiagnosis

  • Limited quality information on the condition

  • Limited scientific knowledge and research

  • Life altering social consequences for patients and caregivers/care partners

  • Inequities and difficulties in access to treatment and appropriate health care

The Rare Disease Experience

Most rare conditions are chronic, progressive, degenerative and life-threatening. According to the top rare disease nonprofit organizations, 95% of rare conditions don't have an FDA approved treatment option. 

 

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 supports R&D efforts to pursue the treatment of rare diseases with Cannabis derived therapeutics. Additionally, through the Responsible Distribution model and Unbiased Third Party Testing programs, Blaze Therapeutics is making open market products available direct to consumer that have passed laboratory testing for toxins and that meet label claims. 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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