GlobalSkin brings Patient perspective to key high-level committees 

GlobalSkin has been invited to sit on the International Rare Diseases Research Consortium (IRDiRC) Chrysalis Project Task Force, as one of only two patient advocate representatives.

The overarching goal of this project is to identify key criteria that would make rare diseases research more attractive to industry for research and development. The task force will serve as a critical link between industry, funders, and advocates in accomplishing the objectives of the Chrysalis Project:

1. Identify key criteria that would make rare diseases research more attractive to industry for research and development.

2. Identify gaps in the current funding opportunity landscape to develop the criteria identified in #1.

3. Identify other non-financial barriers related to the attractiveness of meeting the criteria identified in #1

GlobalSkin was recently invited to join the European Federation of Pharmaceutical Industries and Associations’ (EFPIA) Patient Think Tank. This group provides a forum for an open exchange of ideas, information and perspectives between patient organizations and industry on topical issues impacting patients. The aim of the Think Tank is to ensure that the patient voice is heard in the development of EFPIA policy and practice and to build trust and acceptance around transparent patient-industry dialogue and multi-stakeholder collaboration.

Among GlobalSkin's priorities in 2020 is a focus on strengthening the European dermatology patient organization community and build a strategy to inform and guide activities that support our patient organizations in that region. Participation in the Think Tank will be key in gathering and sharing timely information and developing important relationships.

PsoProtect is a registry for health care professionals to report cases of COVID-19, and PsoProtectMe is for people with psoriasis – whether or not they have had COVID-19.

Both registries aim to provide answers to the common questions from people with psoriasis, including whether psoriasis makes patients more vulnerable to infection and if treatments negatively impact outcomes.

PsoProtectMe, the global self-report registry for people with psoriasis during the COVID-19 pandemic, has released summary data from the first 1000 participants (from 39 countries, across 6 continents) on the PsoProtectMe website (https://psoprotectme.org/current-data/).