Did you know...
Childhood cancer is a rare disease, and the advocacy activities of SIOPE in this field are considerable as:
- 75% of rare diseases affect children
- 30% of rare disease patients die before the age of five
Rare Cancers Europe
Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice.
For more information on Rare Cancers Europe, please visit the website
International Rare Disease Day, 29 February 2012
EURORDIS and national alliances for rare diseases invited all patient organisations, caregivers, researchers, public authorities and companies developing orphan products to get involved in Rare Disease Day events. The purpose was to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.
For more information on Rare Disease Day, click here.
SIOPE calls for greater attention for Paediatric Tumours in RARECARE List
Dr. Gianni Bisogno of the Hospital of Padova in Italy, represented SIOP Europe at the last RARECARE meeting in Treviso on 10th June. He advised participants of SIOPE's support of RARECARE project but also suggested that the project should dedicate one section of the project specifically to paediatric tumours, considering that all paediatric tumours are indeed rare, and amongst paediatric cancers there are additionally ultra rare cancers.
RARECARE, the Surveillance of Rare Cancers in Europe, is a European Commission co-funded project led by the Fondazione IRCCS Istituto Nazionale dei Tumori. Project aims include a definition of a rare cancer and a list of of cancers that meet this definition, as well as an improvement in the quality of data of rare cancers.
SIOPE will be following the progress of this important initiative so for any developments bookmark this webpage. In the meantime, to watch Dr. Bisogno's presentation, click here and you may download the minutes of the meeting
here.
Council of the European Union’s adoption of the proposed Recommendations on Rare Diseases
On 9th June, 2009, the Council of the European Union adopted Recommendations on Rare Diseases after the publication of the Commission's ‘Communication on Rare Diseases: Europe’s Challenges'. To view the original document which outlines a number of strategies to combat rare diseases in Europe, just click here.
Second International Rare Disease Day, 28th February 2009
On the last day of February 2009, patient organisations, carers, researchers and ordinary citizens are joining together to raise awareness of rare diseases and the need for the development of effective treatment and better standards of care for patients with rare diseases.
SIOPE, the European Society for Paediatric Oncology, aims to draw attention to the challenges facing young children and young people with rare tumours and the importance of providing patient support as well as developing public health policies that reflect their needs.
Rare Diseases in the EMEA Consultation Paper
"Rare diseases are life threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Most of them are genetic diseases, the others being rare cancers, auto immune diseases, congenital malformations, toxic and infectious diseases among other categories"
European Commission, Public consultation: "Rare diseases: Europe's Challenges", February 2008
Research into Rare Diseases (RDs) has been fundamental in identifying most human genes implicated so far as well as a quarter of the innovative medicinal products that received market approval in the EU (orphan drugs). Nevertheless, due to the rarity of diseases, research on RDs is not only scarce but are often conducted in different laboratories across Europe since under market conditions, the pharmaceutical industry is reluctant to invest in medical products and devices for rare conditions due to the very limited number of patients / markets for each disease. RDs are thus called 'orphan diseases' as they are orphaned by research focus and market interest as well as public health policy.
In this consultation paper, all types of childhood cancer have been identified as rare diseases.
Please click
here to access the original EMEA paper for public consultation
SIOPE Response
In the field of childhood cancer, treatment has largely been driven by random phase III clinical trials. These are usually investigator-led in the academic community using off-patent drugs outside of their license indication, since few paediatric studies have been performed for licensing purposes. Due to the rarity of childhood cancer, these trials have required a European dimension, with multinational participation.
However, the current Clinical Trials Directive has increased the administrative and cost burdens to open multinational clinical trials research in children, as many drugs are defined as investigational medicinal products (IMPs) because of their off-label use in the paediatric age group.
For further information, click here to view SIOPE's response to the public consultation of European Commission on Rare Diseases.