Get moving against rare diseases 2014
TMB worked with organisations involved in research into rare diseases and providing support to sufferers.
This project was implemented in partnership with a number of organisations working to combat rare diseases, grouped together in two large federations:
- FECAMM (Catalan Rare Diseases Federation) an association of non-profit associations working to fight rare diseases.
- FEDER (Spanish Rare Diseases Federation) which works together with the families of sufferers of rare diseases via projects and services designed to improve their quality of life in the short, medium and long term.
Thursday 2 October, Universitat station (line 2)
Presentation of the campaign and the timetable of events by TMB Chair Joaquim Forn and leaders of the partner associations, FEDER Catalunya and FECAMM.
Thursday 2 October, at 5 pm, at the ONCE Catalunya building
Round table "Testimonies of struggle and survival", organised by FEDER Catalunya in the building’s conference hall. The participants were Màrius Serra, journalist and father of Llullu; Dr Jordi Pérez, a specialist in rare diseases, and Maria Palacín, a psychologist who specialises in team management and leadership.
Monday 13 to Saturday 18 October, Universitat station (line 2)
Blood drive for sufferers of rare diseases. The Blood and Tissue Bank set up a donor point where anyone who wanted to help could contribute to saving lives.
Saturday 18 October, Universitat station (line 2)
To coincide with the blood drive, an information point was set up on Fanconi anaemia and related illnesses. Children were also able to play a part in combating rare diseases with an activity organised by the Spanish Fanconi Anaemia Association.
Sunday 26 October, Parc del Fòrum
Cursa per l'Esperança (Race for Hope), organised by FEDER to raise awareness of the difficulties faced by sufferers of some of these diseases.
Wednesday 29 October, Passeig de Gràcia station (line 2)
Metro users took part in building a fragment of DNA demonstrating the modifications to the protein chain that cause rare illnesses.
4 to 30 November at Diagonal station (line 5)
Photographic exhibition "We are different, we are unique", on the making of the charity calendar of the Nexe Foundation. Fund-raising calendars were also sold, with special appearances by some of the people involved in the initiative.
Monday 10 November
A programme on Minoritaria TV (internet TV channel) to discuss corporate social responsibility and how it affects employees, with specific reference to the “Get moving against rare diseases” campaign as a good example of how companies can get involved in social causes. A TMB manager and an employee involved in the campaign appeared on the programme.
Monday 14 November, 11.00 am to 8.00 pm, at Universitat station (line 2)
Display and "photocall" for organisations for rare diseases, with the special collaboration of a TMB employee. Some twenty associations involved in this area presented their activities and distributed information on the many and varied rare illnesses.
Morning of Saturday 22 November, at l’Espai Gaudí
Fifth "Diseases for life" conference organised by FECAMM. The event included a round table and a medical discussion on rare diseases, with medical experts specialising in research in this field, sufferers and representatives of a range of organisations.
Tuesday 2 December, at 11.00 am, Universitat station (line 2)
Puppet show "The story of Mimi, the blue giraffe", with the special collaboration of the Nexe Foundation and a TMB employee.
Wednesday 10 December at 10.00 am, at Diagonal station (line 5)
Construction of a multi-sensory Christmas tree, with the special collaboration of the Nexe Foundation and a TMB employee.
Friday 19 December, 11.00 am to 12.30 pm, at Universitat station (line 2)
Performance of "The story of Federito", by social theatre company PeixosPeixeres, supported by special guests from the Colla Gegantera del Raval. TMB employees also took part in this activity.