FEDERG at the 47th Congress of the AENP Spanish Association of Pediatric Nephrology, May 2024.
From May 22 to 25, 2024, the 47th Congress of the Spanish Association of Pediatric Nephrology took place in Bilbao. Representatives of the national patient groups, Hipofam (hypomagnesemia and Gitelman syndrome Spain), Airg-E (AIRG Spain), Alcer (Spain), Alcer Bizkaia (Basque Country), Ashua (shua Spain), ACE (cystinosis Spain) and European FEDERG (Europe) were invited to participate with a Stand and for the first time some Spanish groups with oral presentations in the Main Auditorium with the support of FEDERG.
Representing FEDERG, Susana Carvajal Arjona, as recent president of the Federation and secretary, together with Mireya Carratalá AShua España, set up a table with brochures and advertising products to speak with expert doctors and other associations at the national level in order to publicize our federation.
Antonio Cabrera Cantero, invited by Dr. Mar Espino, president of the Spanish Association of Pediatric Nephrology, Dra. Leire Gondra, Dra Leire Madariaga, organizers of the event, he presented the work of 3 entities at a representative table of the national pediatric associations nationals: AIRG-E, Alcer and Hipofam, the 3 Patient Organisations members of FEDERG.
Representing AIRG Spain ( FEDERG member) Antonio spoke about the AIRG-E aid plan for research projects 2024, the work of disseminating genetic kidney diseases with his magazine Nephrogène and his books on rare diseases. He introduced the team and talked about their work in spreading genetic and rare kidney diseases.
Representing ALCER, (FEDERG member) Antonio presented the summer camps of the Crece project for children with CKD and transplant, highlighting the need for the involvement of pediatric doctors in this camp. He also presented the Recommendations of the Childhood and Adolescence group of the same Federation and the work of this group of patients in making visible the needs in the transition to adolescence.
Representing Hipofam (FEDERG member) Antonio spoke about the psychology plan, glasses and mg aids for these families and children, the entity’s fundraising for research into Family Hypomagnesemia at the Vall d’Hebron Foundation and the sessions with patients and support for children with these pathologies.
On behalf of ACE Cystinosis, Lordes Sanz and Cristina Ibañez spoke about the importance and help to families in the face of the diagnosis and extrarenal complications and complications in their daily life and the problems derived from the treatment for this disease, more than 30 pills a day and the side effects in specific treatment with cystearmine, sleep disruption, gastrointestinal problems, body odor, halitosis, the impact of this on your daily life. They also talked about their participation in the Cystinosis Network Europe group (FEDERG member) and their joint work to spread knowledge of the disease and their support for research.
In addition, a study conducted by the Renal Pathophysiology Research Group from the Vall d’Hebron Research Institute (VHIR), together with the Pediatric Nephrology Service from Vall d’Hebron University Hospital, was recently awarded at the 47th edition of the AENP Congress held in Bilbao “Patients with familial hypomagnesemia with hypercalciuria and nephrocalcinosis present miRNA profiles in urinary extracellular vesicles associated with disease progression” was the awarded work.”https://www.vallhebron.com/en/news/news/renal-pathophysiology-research-group-vhir-together-paediatric-nephrology-service-huvh-receive-award-best-oral-presentation-spanish-association-paediatric-nephrology-aenp-congress?fbclid=IwZXh0bgNhZW0CMTEAAR0lcB6tmmhCmWHXTUle7FshzkKUe2f0Ia0SOocLJBHTSiu3pQdcmXVK3Bs_aem_zz_43Q3ucd1RT68Jwtk7FA
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