€ 20,000 donated to the CML Advocates Network during the EHA 2019 Congress!
The World CML Day
CML results from a transformation of a stem cell caused in about 95% of Chronic Myeloid Leukemia patients by the change of chromosomes 9 and 22, which is why World CML Day (9/22) carries a symbolic significance for the patient community.
This day was initiated in 2008 by the patient community to bring awareness about patients’ needs to the general public, politicians and medical professionals across the world.
To face this challenge, every 22 September the entire Chronic Myeloid Leukemia community stands together to raise awareness about one life-changing reality – living with CML.
The CML Advocates Network annually coordinates the World CML Day global awareness campaign to support our 122 members worldwide.
Welcome to EHA 2019 in Amsterdam, The Netherlands
From June 13-16, 2019, the European Hematology Association holds the 24th EHA annual congress at RAI Amsterdam, The Netherlands.
Address details RAI Amsterdam Europaplein 24, 1078 GZ Amsterdam, The Netherlands www.rai.nl/en
More than 10.000 hematologists coming from all over the world, patient organisations, patient advocates representing hematological diseases and other stakeholders will be attending this impressive meeting. Up to 60 free congress registrations were offered to patient advocates, including more than 20 advocates interested in CML, so we hope there will be strong patient attendance!
Click "Read more" to see what has been offered specifically for patient advocates, haematologists and other stakeholders at #EHA24 this year.
Welcome, Patients with chronic myeloid leukemia in Kyrgyzstan!
Now 122 patient organisations from 92 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Patients with chronic myeloid leukemia in Kyrgyzstan.
The CML Advocates Network now totals at 122 member organisations in 92 countries worldwide!
Read more to see the list of CML groups in the Network on our world map.
Apply for an EHA 2019 Fellowship until 9th April
The European Hematology Association (EHA) has already opened the Fellowship Application and Registration process by providing 60 free congress registrations for leaders of hematology patient organisations. This year, EHA has increased their fellowship and is offering an additional 10 fellowships, to provide patient advocates the opportunity to attend the 24th annual EHA congress which is taking place in Amsterdam from June 13-16, 2019.
If you are a representative of a CML patient organisation interested in attending this Congress, you have the possibility to apply for an EHA Fellowship and attend the 24th EHA Congress HERE.
Welcome, ASUL, Uruguay!
Now 121 patient organisations from 91 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Asociación Uruguaya de Leucemia ASUL, based in Uruguay.
The CML Advocates Network now totals at 121 member organisations in 91 countries worldwide!
Read more to see the list of CML groups in the Network on our world map.
CML Advocates Network with the Rare Disease Day 2019
Chronic Myeloid Leukemia is a Rare Disease
What a Rare Disease is?
According to the European Commission, any disease affecting fewer than 5 people in 10,000 in the EU is considered rare. Although this might appear small, it translates into approximately 246,000 people.
Most patients suffer from even rarer diseases affecting 1 person in 100,000 or more. Approximately 5,000-8,000 distinct rare diseases affect 6-8% of the EU population i.e. between 27 and 36 million people.
In the USA, a disease is defined as rare when it affects fewer than 200,000 Americans at any given time.
The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition
- 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.
- 50% of rare diseases affect children.
Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.
