Repaso del congreso de la Sociedad Americana de Epilepsia (AES 2019)

Repaso del congreso de la Sociedad Americana de Epilepsia (AES 2019)

El congreso de la Sociedad Americana de Epilepsia (AES por sus siglas en ingés) es la mayor cita en epilepsia del año, y como tiene lugar cada mes de Diciembre sirve también para hacer un repaso de como ha avanzado el campo a lo largo del ultimo año. AES 2019 fue el año de las terapias genéticas para las encefalopatías epilépticas y de desarrollo. Este artículo es el resumen de lo que me pareció mas interesante del congreso AES 2019

Top 5 insights from the American Epilepsy Society meeting (2019)

Top 5 insights from the American Epilepsy Society meeting (2019)

The American Epilepsy Society (AES) meeting is the largest epilepsy meeting of the year, and because it takes place every month of December it also serves as an annual review on the understanding and treatment of epilepsies. AES 2019 was the year of genetic therapies for the developmental and epileptic encephalopathies. This article highlights what I found the most interesting at the AES 2019 meeting.

Repaso del Foro CDKL5 2019

Repaso del Foro CDKL5 2019

La quinta edición del Foro CDKL5 tuvo lugar en Boston, los días 4 y 5 de noviembre. El Foro es una reunión anual exclusivamente por invitación que organiza la Fundación Loulou y en la que científicos y miembros de la industria farmacéutica se reúnen con representantes de la comunidad de pacientes para repasar los últimos avances en el campo. Este ha sido mi tercer Foro CDKL5, y el segundo desde que me uní a la Fundación Loulou.

Este es un repaso para los grupos de pacientes de las principales novedades del Foro CDKL5 2019.  [SPANISH VERSION - ALSO AVAILABLE IN ENGLISH]

MAIN LESSONS FROM THE 2019 CDKL5 FORUM

MAIN LESSONS FROM THE 2019 CDKL5 FORUM

For the past five years the Loulou Foundation hosts an annual meeting where scientists and drug developers working on CDKL5 deficiency, together with representatives from patient organizations, meet to discuss the latest advances. This was the third Forum I attended, and my second since joining the Loulou Foundation.

Here are the main news and take-home messages from the 2019 CDKL5 Forum that took place in Boston in November 4 and 5.

Dravet syndrome drug development pipeline review 2019

Dravet syndrome drug development pipeline review 2019

The 2019 Dravet Syndrome Pipeline and Opportunities Review provides a review and analysis of 12 drug candidates in development for the treatment of Dravet syndrome, including 11 products that have received orphan drug designations. The Report includes the most recent updates on programs from GW Pharmaceuticals (Epidiolex / Epidyolex), Zogenix (Fintepla, ZX008), Biocodex (stiripentol) , Ovid Therapeutics (Soticlestat, OV935, TAK-935), Takeda Pharmaceutical, Supernus Pharmaceuticals (SPN-817, Huperzine), Xeris Pharmaceutical (diazepam), Epygenix Therapeutics (EPK-100, -200 and -300), NeuroCycle Therapeutics (NCT10015), PTC Therapeutics (ataluren), Stoke Therapeutics (STK-001), Encoded Therapeutics and OPKO Health (OPK88001, CUR-1915).

What the CDKL5 Deficiency community can teach us about patient centricity

What the CDKL5 Deficiency community can teach us about patient centricity

I used to say that at the patient communities “we set the agenda”. It turns out we didn’t, we were borrowing the agenda from scientific meetings. The 2019 CDKL5 Alliance International Research and Family Conference redefined what a patient-centered conference truly is. In this article I summarise the elements that make a meeting truly patient-centered.