Sarcoma Patients EuroNet Association (SPAEN), the European Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAEN is working to improve the treatment and care of sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.
SPAEN: A Better Future For Patients With A Rare Cancer! Read more about the Network.
The 6th SPAEN Annual Conference will be held from 19 to 21 November in Paris/Chantilly (France). For the sarcoma patient community the SPAEN conference is a valuable plattform with an opportunity to learn about advances and challenges in the treatment of sarcomas/GIST and to share experience and best practice. The three days will focus on research, treatment and patient advocacy. Registration will be open by end of May 2015.
Women with gynaecological sarcoma - a rare cancer that develops in the connective tissues of the female reproductive system - face an uphill battle to access the best treatment and care for their cancer. The report highlights some major issues faced by women with gynaecological sarcoma in the UK, in particular reaching a diagnosis, accessing best care and treatment (in sarcoma specialist centres) and accessing support and information. Whilst the findings relate mainly to cancer services in England, the patient experiences and recommendations will be helpful to any patients and clinician treating women with gynaecological sarcoma throughout Europe. The report has been produced with input from patients and sarcoma clinicians.
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level. February 28, 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in many other countries. On and around this day hundreds of patient organisations from more than 80 countries and regions worldwide are planning awareness-raising activities around the slogan Day-by-day, hand-in-hand.
A European consensus approach for the management of desmoid based on patients’ and professionals’ expertise
In May 2014 SPAEN initiated a round table meeting bringing together medical experts, researchers and patient representatives to discuss needs and aspects of desmoid tumour treatment. During this meeting, a European consensus approach has been initialized, and on the basis of this meeting a consensus paper has been coordinated, which has now been published by the EJC as a combined SPAEN and EORTC / STBSG initiative based on patients’ and patient advocates’ and professionals’ expertise. Read more
During this year’s Annual Conference, SPAEN also held its Annual General Meeting (AGM) with elections to the SPAEN Board of Directors. The assembly confirmed that the previous Board Members should retain their places on the Board for the next 4 years and elected new members to the Board. The newly established Board will now be jointly chaired by Estelle Lecointe from France and Markus Wartenberg from Germany.