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SCIENTIFIC
PROGRAM
FIRST CONGRESS
OF RARE DISEASE
> Transforming Utopia into Action >>>
21 -22 -23 JUNE 2021
www.cepof.orgFIRST CONGRESS > Transforming Utopia into Action >>>
OF RARE DISEASE
PROGRAM / Monday June 21
• •
09:50 to 10:10 Prof. Florencia Braga Menéndez
Lic. Carolina Belén Oliveto
, Sra. Carlina Paternoste , Welcome / Opening Ceremony of the 1st Congress of Rare Diseases - ALAPA.
10:10 to 11:55 Lic. Carolina Belén Oliveto , Dra. Ana Rath , Dr. Pablo Barvosa , Introduction to EPOF. ORPHANET a before and an after. Role of the general practitioner -
Dr. Pablo Young , Lic. Silvia Jadur . Second opinion. Athenaeums: Culture of teamwork. Updating of medical curricula.
Psychiatrization of the patient in search. The danger of Institutional violence.
11:55 to 12:10 Break
12:10 to 12:50 Dra. Gisela Streitenberger , Dr. Cesar Crespi . Strategic model for the approach to EPOF
12:50 to 13:30 Dr. Ignacio Zarante , Dr. Juan José Capria . Strategies around the sustainability of precision diagnosis, genetic sequencing and
molecular determinations. Policies to mitigate the diagnostic odyssey.
13:30 to 14:05 Dra. Belén Tillard , Dra. Eugenia Conti . PTC SYMPOSIUM: Familial Amyloid Polyneuropathy
14:05 to 14:20 Break
14:20 to 15:40 Dra. Soledad Kleppe
Dr. Domenica Taruscio
, Lic. Alba Ancochea Díaz
, Sra. Carlina Paternoste
,
,
The undiagnosed patient, an invisible statute that affects 30% of patients.
Diagnosis as prevention of disability. Diagnosis as an identity right and a potential
passport for a translational therapeutic alternative.
15:40to 16:30 Dr. Alejandro Fainboim . BIOMARIN MUCOPOLYSACARIDOSIS SYMPOSIUM: Importance of
interdisciplinary management in patients with Mucopolysaccharidosis.
• •FIRST CONGRESS > Transforming Utopia into Action >>>
OF RARE DISEASE
PROGRAM / Tuesday June 22
• •
10:00 to 12:10 Prof. Florencia Braga Menéndez
Dra. Jean Bennett
, Dr. Osvaldo Podahjcer
, Dr. Botond Roska
, Dr. Alberto Kornblihtt
, Dr. Ignacio Maglio .
, Advanced therapies. Gene therapy.
Steam cells. CRISPR-Cas9
12:10 to 12:20 Break
12:20 to 13:20 Dr. Fernando Pitossi , Ph.D. Stephen Rose , Dr. Guillermo Chantada . Perspectives for the development of Advanced Therapies in LATAM.
Clinical Trials and Research Bioethics. Patients in the management of Research
helping science in the design of clinical trials.
13:20 to 13:30 Dra. Margaret Creus Verni . Strategic model for the approach to EPOF.
13:30 to 14:30 Phd. Marcela Mena , Abg. Soledad Tagliani
Prof. Esp. Thiago Rocha Da Cunha .
, Prof. Esp. Diego Biscioni , Bioethics and Eugenics Incorporation of the Bioethics perspective in the opening
of the Medico-centric paradigm. Family planning. Prevention of EPOF
transmission through pre-implantation genetic diagnosis.
14:30 to 15:20 Dr. Emilio Roldán , Dr. Hernán Machado . Strategic model for the approach to EPOF.
15:20 to 15:30 Break
15:30 to 16:10 Dr. Ricardo García , Dr. Dario Scublinsky . SANOFI SYMPOSIUM: What are we talking about when we talk
about Biosimilars?
16:10 to 16:40 Dr. Norberto Guelbert . BIOMARIN SYMPOSIUM: Evidence and Experience in
Type 2 Neural Ceroid Lipofuscinosis
16:40 to 17:00 Dra. Valeria Canto Soler . Retinal tissue derived from induced pluripotent stem cells and its
application in therapies for degenerative retinal diseases.
• •FIRST CONGRESS > Transforming Utopia into Action >>>
OF RARE DISEASE
PROGRAM / Wednesday June 23
• •
09:30 to 10:00 Dra. Blanca Diez . ASTRAZENECA SYMPOSIUM: Neurofibromatosis.
10:00 to 11:20 Ph.D. Todd Durham , Dr. Rodrigo Matsui
Lic. Begonya Nafria Escalera .
, Ph.D. Durhane Wong - Rieger , Health Economics and policies for development of the science.
Possibilities of Intervention in International Consortia of Research
for developing countries. COVID registry in patients with EPOF.
11:20 to 12:45 Dr. Javier Santos , Dra. Clarisa Marchetti
Dr. Tomás Pippo Briant .
, Dr. Alejandro Berra , Role of Universities in the development of new patents.
Meaning of public drug laboratories, redesigning the pharmaceutical
industry. The path to transparency in the cost of drug production.
12:45 to 12:55 Break
12:55 to 13:25 Dra. Sonia Tarragona , Dr. Sebastián Crespo . National Program for EPOF. Actual implementation of Law 26,689.
Public health policies. Patient Registry.
13:25 to 14:10 Dra. Francisca Masllorens . BIOMARIN SYMPOSIUM: Achondroplasia:
Generalities and future perspectives.
14:10 to 14:30 Dr. Alejandro Amor . Strategic model for the approach to EPOF
14:30 to 16:10 Lic. David Peña Castillo
Dr. Stephen Groft
, Sra. Matha Herrera , Sra. Miryam Estivill
, Prof. Florencia Braga Menéndez .
, Latin American situation. High-priced drugs. The Latin American patient vs
the rest of the world. Rare Diseases in Latin America and
the Caribbean Update (ERCAL).
16:10 to 16:20 Break
16:20 to 17:20 Prof. Florencia Braga Menéndez (ALAPA) , Lic. David Peña Castillo (FEMEXER) , Future of the social organizations of patients. Closing Session.
17:20 Sra. Carlina Paternoste . Closing of the Congress.
• •FIRST CONGRESS
OF RARE DISEASE
> Transforming Utopia into Action >>>
www.cepof.org
CONGRESS SECRETARIAT
COMERCIAL
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cepof@cycme.com.ar Móvil +1 (954) 707-0246 Móvil +54 (11) 5349-9986
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