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CML Advocates Network with the Rare Disease Day 2018

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Chronic Myeloid Leukemia is a Rare Disease

What is a Rare Disease? 

The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition. In Europe and many other regions, a disease is defined as rare when it affects fewer than 1 in 2000. One rare disease may affect only a handful of patients in the European Union and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

In the USA, a disease is defined as rare when it affects fewer than 200,000 Americans at any given time. 

In Latin America, according to ALIBER, the Ibero-American Rare Disease Alliance, 42 million people suffer from a rare disease in this region.

In Africa, according to Africa-Rare organisation data, this region remains the most vulnerable. Due to global issues such as poverty, hunger and limited financial stability, health issues have a high impact on the continent and 50% of people affected by a rare disease are children.

In Asia, based on the World Health Organization’s prevalence estimate, collectively, rare diseases can affect 292 million people in the Asia-Pacific region.

In Australia, as Rare Voices Australia (RVA) organisation points out, current conservative estimates indicate that approximately 6-8% of Australians are affected by a rare disease. 

rddposter 400x600Why is CML a rare disease?

Chronic myelogenous leukemia (CML) accounts of about 20% of all leukemias affecting adults. It typically affects middle-aged individuals and rarely adolescents or children. According to Orphanet, the portal for rare diseases and orphan drugs, the CML epidemiology signifies an annual incidence estimated at between 1 and 1.5 cases per 100,000 and its prevalence at around 1 in 17,000.

The World Health Organization published on "2014 Review of Cancer Medicines on the WHO List of Essential Medicines: CHRONIC MYELOGENOUS LEUKEMIA" that while there is a paucity of reliable data from resource-poor countries, extrapolation from existing data would suggest that CML will affect over 100,000 patients worldwide every year and represent a significant global health burden. Because treatment with imatinib results in prolonged remissions in the majority of patients, the prevalence of CML is much higher and it may account for up to 15% of all leukemias in the developed world though global prevalence is not known.

The American Cancer Society's estimates that for 2018 in the United States:

  • About 8430 people will be diagnosed with CML: 4980 men and 3450 women.
  • About 1,090 people will die of CML: 620 men and 470 women.

According to the study "The global incidence and prevalence of chronic myeloid leukemia over the next ten years (2017-2027)" Swarali Tadwalkar, J Blood Disord Transfus 2017, 8:2 (Suppl) DOI: 10.4172/2155-9864-C1-025, the incidence of CML in Europe is 1,4 and the prevalence, 11 cases per 100.000 in 2017.

Even when CML is a rare disease, advances in treatment and care have transformed CML into a disease where patients, if treated effectively, have the chance to live a normal and long life. “However, there are still huge challenges for patients with CML, which also vary from region to region", said Jan Geissler, CML patient and co-founder of the CML Advocates Network. These challenges, such as access to high-quality therapies and diagnostics, treatment according to expert recommendations, adherence to therapy, effective side effect management, and development of a cure can only be tackled in partnership between patients, healthcare providers and researchers."

Rare Disease Day

Rare Disease Day is celebrated on the last day of February each year. The main goal of this global action is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The CML Advocates Network supports the international Rare Disease Day coordinated by Eurordis, organisations of which we are members since 2014, and encourage all our members to participate and be involved in this global campaign. You can find all information and resources to be part of the Rare Disease Day at rarediseaseday.org

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