This virtual space has been created in order to raise awareness about Lynch syndrome. Lynch syndrome is a “hereditary condition” that increases the probabilities of suffering from colon, endometrial and ovarian cancer, as well as other tumours to a lesser extent. This information portal will offer rigorous scientific information about the syndrome as well as provide opportunity for virtual exchange and debate among those afflicted with the syndrome.
The 10th November 2012 marked the first ever awareness workshop for families and individuals afflicted with Lynch syndrome jointly organized by the Hospital Clinic and the Vall d´Hebrón University Hospital (HUVH) here in Barcelona. The workshop also marked the official inauguration of the very first association in our country for those afflicted with the syndrome, which is at the same time, the first association of hereditary cancer in Spain. Having had the honor of announcing this at the workshop, I would like to follow up in this address by thanking the 48 people who became members of our association as a result of attending the meeting. Thanks to their confidence in us we can now launch this website. We can’t and don’t want to compete with the associations of patients that have been active for a long while. Quite on the contrary — we have asked them for their collaboration. I also want to thank many of them for their encouraging words and for allowing us to publish their links on our website as an important resource for individuals with the Lynch syndrome.
We live in increasingly uncertain times. Lynch syndrome however brings with it an additional burden with important challenges at personal and family levels. Both the available technologies of today as well as the commitment of healthcare professionals have allowed some of us to already tell our story and work to ensure that our children have a future full of hope; regardless of the many challenges.
Our association is growing thanks to the generous time and dedication volunteered by a handful of people who are also dedicated to this supportive and socially responsible project. The stories of struggle and courage of our members fill us with pride and they are the main reason we carry on with the project. While a lot of us felt alone when diagnosed with the syndrome, this association´s raison d´être is firmly “not to let this happen again”. Whether it is to share adversities, spread hope and disseminate knowledge, all and more aside, has a place in this space.
Welcome to AFALynch.
Maria Ricart – AFALynch President