ACTIVITIES DEVELOPED DURING 2004 BY THE SPANISH NF ASSOCIATION

• Celebration, on January 24^th of the seventh national meeting. At this time we had censed 1.111 affected persons. As usual we dedicated the firs part of the meeting to the professionals related with NF. They told us the news and answer all our questions. This year, beside our clinic and genetic assessors,  Dr. Ignacio Pascual Castroviejo & Dra. Carmen Valero, assisted, as invited, four doctors that let us know the news in their specialities.
  
• Between March 19^th to 22^nd the two voluntaries from the association assisted to the 3erd voluntary works held in Cracovia (Poland). These works are held as part of the project of the European Federation of Associations of NF, subsidized on the 70% by the European Union
  
• On the 29^th of May, the president and genetic assessor assisted to the general meeting of the  Portuguese nf Association
  
• We have continued with the distribution of the book edited in May 2000 under Dr’s Castroviejo coordination. This is the first book edited in Spanish and 14^th professionals from Medicine and Genetic camps have contributed to its development besides Dr. Castroviejo. Actually we have distributed 2000 copies between paper and CD format    
  
• We still count with the collaboration of Carmen Valero, our Psychologist, and under her direction are held sessions of auto help groups and individual sessions in Madrid as well as by telephone with members of the Association from anywhere from Spain
  
• We have signed a collaboration agreement with Ramón y Cajal hospital and Caja de Madrid for two years, which can be extended if all parts are interested and we can afford it. The agreement covers a project of investigation “Genetic study on the variability of expression in NF 1: mosaicism and modification genes. Design of a protocol for molecular diagnosis of the illness” The project is directed by Dra. Concha Hernández, representing the hospital, and Dra. Carmen Valero for the association.
  
• We have elaborated and distributed to association members and more than 200 doctors 4 Informative papers (numbers 24 to 27) covering news related with our illness and as well a report of our activities. The papers were made in March, June, September and December
  
• We have distributed about 10.000 triptychs that explain the illness
  
• About 160 explicative leaflets have been distributed to the new families that have got in touch with us for the first time, not only from Spain but from Spanish speaking countries. The leaflets have been given as well to professionals and students of medicine, psychologist, social workers, etc.
  
•  The president of our association belongs to the Board of Management of the European federation of Neurofibromatosis associations that was funded in Ulm (Germany) with representatives from the following countries: Bulgaria, Belgium, United Kingdom, Sweden, Ireland, Switzerland and Norway. This Board met on year 2002 in Sint Niklaas (Belgium) and in July in Turku (Finland). There a new Board was elected, being the Spanish candidature to became a member the most voted.
  
• We have facilitated information and help to persons and nf associations from Spanish speaking countries: Uruguay, Chile, Argentine, Mexico, Costa Rica, Colombia, Perú, …, and so to programs in Spanish realized by associations in Italy, United States, …
  
• We have sent information and appeared some times in press, television, and radio (in international, national and local areas)
  
• We held a Web site (www.aeenf.com) for which we have a subvention from “Fundacion Telefonica” and have had many visits to it. We have received and answer a media of two mails per day from our e-mail: asoc_nf@eresmas.com.
  
• We have sent all the documents required to continued being an Public utility association (according with 2001 laws)
  
• We have held meetings en Health Ministry and Madrid Community in order to obtain a reference unit for our illness. Up to the moment with no results
  
• The association has a small office in Madrid sited in Avda. América nº 4 1º A, where we can work and have activities and meetings
  
• The fourth youngster coexistence was held with a trip to London in September.
  
• We are elaborating the first affected census that is made in our country. On December 31^st we were 1.111 persons
  
• We have collaborated with a group of Italian doctors in a project to evaluate, in a European level, quality of the welfare and health attention received by affected person with rare illness (nf among them)
  
• “Fundacion Real Madrid” offers, from time to time tickets for our members to assist to social or sport events
  
• Last May, on the international Museums day some of our members participate on experimental archaeological works organized by a local museum 
  
• Assistance to working tables organized by the office of the patience defender from Madrid Community held in Madrid on April 19^th, 21^st, 22^nd, 27^th 28^th and 29^th, in order to elaborate  “the Card of rights and owes for patience  and users of the health system” for Community of Madrid
  
• Request to the Community of Madrid for the declaration of two of our projects: the elaboration of the first census elaborated in Spain of people affected of NF, and the project of investigation on the laboratory of Molecular Genetic made at Ramón y Cajal Hospital. Both of them  were rejected because they could not been set as congress, meetings, etc
  
• Organization of a play of theatre for the association’s kids, their brothers, sisters and friends, in the Holy Kings celebration. The play was  King Lion and was made by group Tomateleon on the 10^th of January
  
• Neurofibromatosis was included in the program of Medicine as a free configuration material for the University of Sevilla. Our Genetic assessor Dra. Carmen Valero was invited to participate in the part dedicated to rare illness and give a conference entitled “Neurofibromatosis: a rare illness, a common illness”
  
• On the 26^th of October the president and the Genetic Assessor assisted to a popularizing talk over Neurofibromatosis organized in the Medicine University of Cordoba by the association
  
• One of our members, Rosa Suarez, is collecting information about the learning disabilities that about a 40% of children with NF 1 suffer. She is giving talks in schools and universities of  Madrid