There are a little over 230 signatures for the call to action campaign to date.
I would like to ask all members who access this site to PLEASE sign this important petition.
The CML Support Group is a partner in this initiative and I am part of the organising committee for the Rare Tumours in Europe: Challenges and Solutions conference that took place in Brussels in November last year. I also spoke at that meeting on behalf of rare cancer patients.
I continue to work as part of the organising and campaign committee with all the partners involved, including some leading European patient groups.
If we are to continue to see the development of effective therapies and new forms of treatment for rarer cancers like imatinib/dasatinib and nilotinib for CML- which is a rare cancer with an incidence rate of 1-2 per 100,000 population- then we need to continue to support European initiatives like this.
Rare cancer patient groups need to join forces with others in order to speak with a more powerful voice.... especially in times like these where we will no doubt be seeing healthcare cost cutting increase.
CML patients have been very fortunate to be one of the first group of rare cancers patients to be treated with a new form of therapy i.e imatinib et al.
PLEASE lend your support to this campaign and sign up.... there is a link to the website (rarecancers.eu)on the left hand side of this page.... 'call to action'... just click on that and provide your email details and don't forget to say you are a CML patient or carer.
I have posted a reminder of a few of the points that the campaign is asking for...
The “Call to Action Against Rare Cancers” has been developed as part of the campaign European Action Against Rare Cancers
and is based on the Political Recommendations that were the result of the conference
“Rare Tumours in Europe: Challenges and Solutions”
held in November 2008 in Brussels, that brought together 150 European representatives from:
government bodies,
research institutes,
healthcare professionals,
industry,
patient groups and
health advocacy organisations.
We call on European governments, the European Union institutions and other international governmental organisations, the research community, the pharmaceutical industry, medical professionals and members of civic society to give a high priority to the issues linked to rare cancers.
We call on all relevant stakeholders to work towards:
o Substantially improved equity of care in rare cancers
o Development of new effective therapies for rare
cancers:
o Facilitating clinical studies in rare cancers
o Balanced, timely and transparent assessment of new
therapies:
o Building a knowledge-base:
o Increased knowledge-sharing:
o Timely and accurate detection and provision of care
Thanks for your support... it really does matter.
Sandy