Can Ruti 'shows its rare' on Rare Disease Day

Researchers 'showing their rare' for Rare Disease DayResearchers 'showing their rare' for Rare Disease Day
Researchers 'showing their rare' for Rare Disease Day
- Campus Can Ruti

Many activities have taken place this week on Campus Can Ruti to celebrate the International Rare Disease Day on the last day of February.


Throughout the week the IGTP and different institutions on the campus have participated in various activities under the international slogan #ShowYourRare.  This is a social media campaign to provide visibility for people with minority diseases, and in our case to highlight our research into these rare conditions.

The challenge was to paint your face and post a picture on any social network with the hashtag #ShowYourRare #MyRare o #RareDiseaseDay.  People followed the activity of our professionals on Twitter @gtrecerca and @hgermanstrias with photos of researchers and doctors who carry out research into rare diseases.  You'll find them all here on this Twitter stream.  

This light-hearted activity has allowed us to put faces to the investigators and doctors on our campus who carry out very serious research into these sometimes devastating diseases. 

  • The group led by Dr Gisela Nogales and Dr Jaume Coll study neuromuscular and neuropediatric diseases
  • The Neurogenetics Group led by Dr Antoni Matilla works mainly on ataxias and Sanfilippo Syndrome
  • The Infant Hepatic Oncology team led by Dr Carolina Armengol is currently leading biological and pathological studies in the first international clinical trial for children with liver cancer
  • The main line of research for Dr Mireia Jordà is endocrine tumours
  • Dr Eduard Serra heads the Hereditary Cancer Group.  They study Neurofibromatosis; patients with these hereditary diseases have a predisposition to developing tumours of the peripheral and central nervous system
  • For the Josep Carreras Leukaemia Research Institute Dr Mayka Sanchez's laboratory study rare diseases associated with iron metabolism and hematology

At the Josep Carreras Leukaemia Research Institute the great majority of research lines are into what are classified as rare diseases, many blood cancers and other haematological diseases fall into this category.  Examples are research into lymphoblastic leucemia carried out by Prof Josep Maria Ribera and Dr Eulalia Genescà and Dr Tomàs Navarro's group who study lymphomas in immune-depressed HIV patients.  See their article on this work here.

Public Session

The Germans Trias Hospital and the Germans Trias i Pujol Research Institute have been working for years to educate people about the illnesses considered to be rare diseases and to establish them as a social and health priority through a series of activities.  This year we have an important ally in the Guttmann Institute, which has organized a Workshop on Rare Diseases, open to the public.   The event was attended by the Counsellor for Health of the Badalona city council Francesc Ribot and Dr Pilar Magrinyà Rull, General Director of Health Planning who presided the opening and closing speeches and health professionals from different organizations on the campus.

7th Charity Run of Minority Diseases

Activities come to a close on Sunday 4 March with the 7th Charity Run for Minority Diseases organized by the Residents Association of Turó Caritg, the Acció Badalona Group and the Shop-Keepers Association of Piferrer Salut Alta of Badalona.   Money raised will be donated to the Neuromuscular and Neuropediatric Research Group at the IGTP led by Dr Gisela Nogales and Dr Jaume Coll.  The multidisciplinary group made up of neurologists, paediatricians and researchers work on different research lines including type 1 Myotonic Dystrophia (Steinert's Myopathy) and Duchenne Muscular Dystrophy and type 5 glycogen storage disease (McArdle Disease).