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Madrid hosts the 1st meeting of families affected by prion diseases

By events, news

La Vanguardia

12/12/2015 08:22


The Spanish Association of the disease of Creutzfeldt-Jakob (CJD) has organized this Saturday the I meeting of families affected by prion diseases, a meeting first in Europe, in the Hotel Novotel Madrid Puente de la Paz, to help the families of the patients, promote unity among them, inform those affected and give visibility to this medical condition.

“This meeting, which has been a huge effort, is organized altruistically to help families. “It is important to give visibility to this type of rare diseases, since one or two people of every million population suffers”, explained the head of the laboratory of Proteomics of CIC BioGUNE and creator of the Association, doctor Joaquín Castilla, in an interview with Reuters. About 70 cases of prion diseases are diagnosed per year in Spain.

During the event several lectures and presentations are held to share the personal experiences of the families concerned. It also boasts the presence of leading experts in the study and research of prion diseases, as the own Castile or neurologist Adolfo López de Munain.

“We want to help families informing them about such diseases, explaining the palliative treatments that are conducted with talks. “In addition, we wanted to share experiences and information on prion diseases, providing among all new ideas to improve the situation”, said Castilla.

Prion or encelopatias spongiform diseases are life-threatening ailments for which there is no cure or effective treatment. Considered group of Graves disease, these include Creutzfeldt-Jakob disease, the Fatal familial insomnia or Gerstmann-Straussker-Scheunjer syndrome.

They can be inherited or genetic diseases. In the case of hereditary, if one parent has a dominant gene there is a chance of 50 percent of newborns suffering from a prion disease, as explained by the expert.


Type neurodegenerative, progresses very quickly, “with a six-month median survival,” Although some cases may be 3 months or 2 years, it has pointed out Castilla. It usually affects individuals around age 60, although in the case of the hereditary pueden dar from age 30 to age 60-70. There are also exceptions, as the case of a 12 year old Spanish girl, to which four years ago was detected of Creutzfeldt-Jakob disease and became the youngest case worldwide.

In addition to meeting this Saturday, the Spanish Association of the disease of Creutzfeldt-Jakob (CJD) tomorrow will be with Isabel Gemio Foundation, which is holding a charity weekend to raise money to investigate and give visibility to rare diseases.

Spanish Family Meeting Programa


Highlights of Prion 2015

By events, news, presentation

To bring the best review of Prion 2015 in Colorado last month, Deana Simpson and I, on behalf of the CJD International Support Alliance, asked Sonia Vallabh and Eric Minikel to share their blog with you all.

Personally affected by prion disease Sonia and Eric have become prion researchers and their passion, dedication and hard work towards finding a cure provides a lot of hope for other families.

Prion Alliance Blog


February 2015

By news

The CJD International Support Alliance would like to welcome 4 new members to our Friends and Advisory Group:

  • Professor Andrew Hill, Principal Research Fellow, University of Melbourne,
  • Associate Professor Michael Geschwind, Memory and Aging Center, UCSF, San Francisco,
  • Dr Kevin Keough, Executive Director, Alberta Prion Research Institute,
  • Associate Professor Gianluigi Zanusso, Neurology and Movement Department, University of Verona, Italy.