FEDER, the Spanish Federation for Rare Diseases is celebrating the World-Rare Disease Day with more than 200 activities in the frame of the  annual Awareness Campaign.

The most remarkable event will take place at the Spanish Parliament, chaired by President of the Congress, José Bono.

We are also organizing: I Annual Running Race for RD , with an estimated participation of 2.000 people.

Our message for families and RD patients, is  a message of hope, claiming for more centers/units of reference and more research for unfrequent diseases and a message of support, we do not like any affected person to stay isolated.. For the campaign, we count on Andrés Iniesta´s support, a player at Barcelona Football Club.

This year, Spain is making a big effor for clame for the investigation and the creation for a lot of center and units of reference.

Let us work together on this!!

Last year, in March, an oficial act took place to commemorate the First Worl Day on Rare Diseases. Her Magesty the Princess of Asturias hosted this act, which took place in the Spanish Senate, where she tried to trasmit hope to those people affected by a rare disease.

In the following text, you can see the discrus that she gave on the World Day Act.

 Thank you very much, Mr President, Senators, for your hospitality, for the institutional significance of being here today, in the Senate with people who suffer from a rare disease and with their families. Even though last February 28th it was the World Day of Rare Diseases, the most important thing is the support that we give every day.

The truth is that I do not know much about glucogenosis, neurofibromatosis, cystic fibrosis, esclerodermia or Takayasu arteritis, the disease Iliana has talked to us about.  Nevertheless, I do know some things about Lucía, her mother Carmen, Santi, Ana, Marta, Marina, Mateo… Thanks to them we have realized how much you suffer, how complicated your daily life is, how difficult it is to get the right diagnosis, how hopeless and despair you must feel sometimes. A very young person, a wonderful woman affected by one of these terrible diseases, told me that sometimes she has a deep feeling of tiredness and sadness.

Maybe not all of us are aware of the fact that there are thousands of people for whom, for instance, getting up early and taking their sick kids to school is extraordinary. There are parents for whom something as normal as wondering what their kids will study or where they will be able to work are just wonderful dreams. People and families who suffer from a rare disease fight every day. We want that battle to be ours. We want you to feel that it is also ours.

Giving visibility and mainly giving voice to those living with such diseases is part of what we can do.

It is the whole society´s duty, though, to commit itself so we all know what rare diseases are, the consequences they have and how to help, each one in their own way so the life of those suffering from a rare disease and the life of their families can improve.

I know you have many problems; we had a meeting at the Zarzuela in December and we had the chance to talk about the problems you have to face everyday. We are here to try to overcome them, to raise awareness in our society of rare diseases through a commitment based on respect, solidarity, equality and the love that you all deserve; a commitment for which again you have my support.

Three million people suffering from a rare disease are many people, but it would not be any different if there were only a few of you. The type of care and the commitment should be the same. We just gave some awards with which we want to acknowledge that effort from people and institutions which help us make your life easier. Congratulations to them too.

I would also like to thank the work that the institutions, the different administrations, the experts, the health workers, organizations such as FEDER, which work against rare diseases and against their impact. I would like to specially congratulate the Spanish Federation of Rare Diseases and those who dedicate their efforts against these diseases, whose effort Spain acknowledges and supports today in the Senate.

I would like the stories I talked to you about before to have a happy ending.  I would like Lucía to tell us what she would like to do when she grows up, Mateo to be able to run and jump around the park.  I would like no father, mother or person with a rare disease to feel alone, isolated or uninformed.

Let´s work together to reach our goal.

Thank you very much