FEEMH launches the Committee of Experts on Hereditary Metabolic Diseases

 

 

 


/COMUNICAE/

On the 18th of MARZO in 2021, the official constitution of the Committee of Experts on Metabolic Diseases was made up of various members of the medical and research community working in the field of metabolopathies. This committee will advise and guide the Spanish Federation of Hereditary Metabolic Diseases (FEEMH) to improve the living conditions of those affected

Since the beginning of its journey in 1990, Spanish Federation of Hereditary Metabolic Diseases (FEEMH), it has had as one of its objectives to have experts in these impacts so that they can advise and clarify issues that today arise the families who manage different Metabolopathies in one way or another.

To this end, the Federation directive created a working group that shaped this purpose. From a first contact, FEEMH was clear that the representation of these experts should contemplate the main disciplines that deal directly with those affected; that is, from medical, dietary, psychological, neuronal, researcher, etc. and that, of course, it is intended to be of the highest level and reputation.

 

Contacts with metabolic specialists that the Federation considered to be representatives of the established profile have been initiated since mid-2020. From that moment on, and once the working group was formed, on the 18th of MARZO of 2021, the official constitution of the Committee of Experts on Metabolic Diseases with top-ranking physicians who have offered to collaborate with the Spanish Federation of Hereditary Metabolic Diseases (FEEMH) in their approach to the affected and family members of the various Metabolopathies to which the organization represents.

 

The agenda for this first meeting was based on the following points:
1. Official Constitution of the Advisory Council on Metabolic Diseases.
2. Evaluation of the priority or not of those affected in the vaccination of COVID 19.
3. Need to establish the core metabolic multidisciplinary team
4. Unification of treatments in the national territory.
5. Recognition of the specialty related to NDEs.
6. Reclaim the maximum unification of neonatal screening throughout the territory
national.
7. Support for low-protein products to be considered dietaryotherapy.
8. Recognition of partnerships in support of metabolic patients.

Due to the situation of COVID pandemic, this meeting took place telematically, but it was not obice for a perfect connection between all and
the objectives sought by the Federation. These objectives are still to be realized, since the above was only a breakthrough to a collaboration that all parties presuppose will be very fruitful.

 

More information on the web Think of metabolic

From The Federation of Hereditary Metabolic Diseases, we were grateful for the interest shown by all the experts who have accessed this advice:
• Àngels García Cazorla (Sant Joan de Déu)
• Bethlehem Pérez González (CEDEM)
• Amaya Bélanger Quintana (Ramon and Cajal)
• Natalia Egea Castillo, (Sant Joan de Déu)
• Eva Venegas Moreno, (Virgen del Rocío)
• María de Talló Forga Visa (Hospital Clínic)
• Montserrat Morales Conejo (12 October)
• Carmen Delgado Pecellín, (Virgen del Rocío)
• Antònia Ribes Rubió (Hospital Clínic)
• Mireia del toro Riera, (H. Vall d`Hebron)
• María Luz Couce Pico (Hospital Clínico Universitario de Santiago)
• Domingo González Lamuño (H. U. Marqués de Valdecilla)
• María Bueno Delgado (H.U. Virgen del Rocío)
• Javier Blasco Alonso, (University Regional Hospital in Malaga)

FEEMH launches the Committee of Experts on Hereditary Metabolic Diseases

FEEMH launches the Committee of Experts on Hereditary Metabolic Diseases

On the 18th of MARZO in 2021, the official constitution of the Committee of Experts on Metabolic Diseases was made up of various members of the medical and res

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2023-04-11

 

FEEMH launches the Committee of Experts on Hereditary Metabolic Diseases
FEEMH launches the Committee of Experts on Hereditary Metabolic Diseases

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