Slide

Little time is lacking

.
.
0
0
0
0
Days
0
0
Hrs
0
0
Min
0
0
Sec
DEAR ALL,

As representatives of ALAPA, Argentina Patient Alliance, we are pleased to inform you that during the days 21, 22 and 23 June we will hold the first congress of rare diseases in LATIN AMERICAN under the virtual mode.

In the framework of the Global pandemic, we find ourselves and the sectors that we represent in a situation of high vulnerability. For this reason, we consider it necessary to propose a Congress with multidisciplinary themes and including medical and research areas, as well as Government Organizations and Patient Organizations.

We believe that the success of the Congress will be based on achieving a workspace with an attractive scientific program, new therapies and generative debates on new health accessibility policies for the patients we represent.

We will have the participation of national and international speakers of academic renown, who will present successful experiences carried out abroad and policies that must be implemented to transform a current health problem into a path of opportunities and learning.

AUTHORITIES
  • CARLINA M. PATERNOSTE
    President of the Congress

  • MARCELO MINOTTI
    Secretary of the Congress

  • FLORENCIA BRAGA MENÉNDEZ
    General Director of ALAPA Projects

  • Lic. CAROLINA OLIVETO
    General Director of ALAPA Programs

Logotipo ALAPA
Isologo de CEPOF 2021

ORGANIZING COMMITTEE

  • FLORENCIA BRAGA MENÉNDEZ
    General Director of ALAPA Projects

  • CAROLINA OLIVETO
    General Director of ALAPA Programs

  • ARIEL PELONI
    General Director of Communication. ALAPA
  • ANA SALAS
    Sclerosalud (Scleroderma and Raynaud))

  • VERÓNICA ALONSO
    AMA (Mucopolysaccharidosis Association in Argentina)

  • VANINA SÁNCHEZ
    President of FAME (Families Spinal Muscular Atrophy)

  • MARISOL ETCHEPARE
    Argentine Group of Patients with Uveitis

  • NANCY CAMPELO
    HIPUA (Pulmonary Hypertension Argentina)

  • CLARISA MARCHETTI
    Province Director of the Cancer Prevention, Diagnosis and Treatment Institute

  • ANDREA FRIONE
    Argentine Amyloidosis Group

  • REGINA PROSPERO
    Rare Lives Brazil

  • FLORENCIA AGÜERO
    Rare diseases Patagonia, syndrome Ehlers Danlos

  • ALEJANDRA TORNERO
    ALA Argentine Lysosomal Alliance

  • RAQUEL GÓMEZ
    OIA Imperfect Osteogenesis

  • MARIANA PALACIOS
    ADAR Argentine Atopic Dermatitis Association

  • MARCOS ROMANO
    Network of Patients with Pigmented Retinitis

  • LAURA FERNÁNDEZ
    ADEE Argentine Group of Achondroplasia and other skeletal dysplasia that cause dwarfism

  • JOHANA BAUER
    EMA Multiple Sclerosis Argentina

  • MARÍA CRISTINA CATALDO
    AVITA Victims of Thalidomide in Argentina

  • DANIELA SAVARESE
    Lawyer

Scientific Program / Thematic Axes

Day 1 - Monday 21

09:50 to 16:30

See the Program

Arriving at precision diagnosis.

  • Diagnostic odyssey.

  • Undiagnosed patients – invisible status.

  • Possibility of precision diagnosis as right.

  • Updating of medical curricula.

Day 2 - Tuesday 22

10:00 to 17:00

See the Program

Therapeutic orphan.

  • High-priced drugs.

  • Translational medicine for local clinical application.

  • Advanced therapies.

  • Family planning and prevention of transmission of EPOF.

  • Bioethics and Eugenics.

Day 3 - Wednesday 23

09:30 to 17:20

See the Program

Access to patient health EPOF.

  • Real implementation of National Law 26,689.

  • Public politics.

  • Patients registries.

  • Latin American situation of the patient with EPOF and high-priced drugs.

  • Future of patient organizations.

See the Full Program

Scientific Committe

International Guests

National Speakers

General information

Relevant Statistics / Context


350

Million people
approximately

are affected by some kind of Rare disease in the world. In our country approximately 3,500,000 people have any of these pathologies.

3.500.000

are the estimated people affected in our country.


6
% to 8%

of the world’s population has some EPOF.

1 in 2

patients diagnosed with an EPOF is a child.

6.000 to 8.000

Rare diseases are currently estimated.

80%

of EPOFs have a genetic origin.

8 years

it is the average time it takes for affected patients to receive an accurate diagnosis.

60%

Without Diagnosis in Argentina.

67%

of Patients are misdiagnosed.

Isologo de CEPOF 2021

Sponsors

International Sponsors

Auspicios

Registration

Apply for ALAPA Scholarship
If you do not have a Scholarship and want to apply for one, in this section you will find the link very soon!

Profesional de la Salud Inscribase aquí!
Público General Inscribase aquí!
Scholarship registration granted.
If you do not have a scholarship and want to apply for one, in this section you will find the link very soon to do so!

Inscríbase aquí!
Registration includes:
  • Access to the Congress platform.

  • Access to Scientific sessions.

  • Access to the trade show.

  • Access to the scientific program.

  • Possibility of downloading information.

  • Access to the post-Congress virtual platform – Talks on demand.

  • Online certification.

Contact Us

Congress Secretariat
Logotipo de CyC
If you have a Rare Disease, a family member or friend with suspected EPOF or you are or know a patient without diagnosis and want to contact ALAPA, Leave us your message HERE!
Campo requerido / Ingrese aquí su nombre
Campo requerido / Ingrese aquí su apellido
Ingrese aquí su teléfono celular
Gracias por su mensaje, a la brevedad nos pondremos en contacto con Usted.
Hubo un error al intentar enviar su mensaje. Por favor, inténtelo de nuevo más tarde.
Isologo de CEPOF 2021