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More than four hundred people take part in the VII National Congress of Rare Diseases (22/10/2014)

Over four hundred twenty people will take part between 24 and 26 October at the VII National Congress of Rare Diseases to be held in the Hotel Executive Sport Totana.

As part of this conference will also take place the VII National Meeting of Families and Affected by a rare disease and the II International Symposium Lipodystrophies.

The Congress is organized by the Association of Rare Diseases D'Genes, and the Association of Relatives Affected Lipodystrophies (AELIP) and delegation to Murcia of the Spanish Federation for Rare Diseases (ERDF), will open this Friday at 10 : 00 hours with the witness table, "Living with a rare disease."

Among the main novelties of Congress include the fact that this was the first edition that could be sent to the same communications or posters on rare diseases, and there have been a total of 124.

The conference aims to be a meeting point between clinicians and researchers, patients and their families who live every day with the reality of low-prevalence diseases.

In fact, it will be represented 52 patient organizations and families of up to ten different regions.

During the course of the congress presentations instead of experts will discuss various issues surrounding rare diseases will.

So, among other things, the Information System on Rare Diseases in the Region of Murcia (SIER) value of orphan and ultra-orphan drugs, hypophosphatasia, update on diagnosis and treatment of mucopolysaccharidosis or universal patient was analyzed .

There will also be presentations on the pharmacological treatment of chronic pain, tuberous sclerosis, the impact of newborn screening programs in inborn errors of metabolism or neuromuscular diseases.

Also, among other issues, pediatric palliative care, Reiki as a complementary therapy, feeding difficulties, family cardiomyopathy and Fabry disease, idiopathic pulmonary fibrosis, sexuality and disability or key to empowering people with rare diseases will be addressed.

The conference also will be held roundtables on acute intermittent porphyria, nervous system and adipose tissue and the presence or treatment of rare diseases in the media.

More information:

Source: D´Genes

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