The ongoing coronavirus/COVID-19 pandemic has caused widespread uncertainty across the globe, and a lot of us have questions about what to do or what to expect. The rare disease community is no different. The situation is worrying to practically everyone, but a lot of rare disease patients and the chronically ill are at a heightened risk of severe complications if they are infected.
Challenges for the Rare Disease Community
This can be for a variety of reasons, but this most often applies to patients that have respiratory conditions or who are immunocompromised for any reason. Other difficulties include maintaining access to treatment, supporting patients, and accounting for possible delays in clinical studies. However, the rare disease community as a whole needs to come together to figure out a way to organize and respond effectively to the ongoing pandemic.
The World Orphan Drug Congress is holding a webinar titled “Rare disease community response to COVID-19: Patient group and industry perspectives.”
The event will include comments from these panelists:
- Sophie Schmitz, Managing Partner, Partners4Access
- Annie Kennedy, Chief of Policy and Advocacy, EveryLife Foundation for Rare Diseases
- Vikram Karnani, Executive Vice President, Chief Commercial Officer, Horizon Therapeutics
- Lynsey Chediak, Patient, Project Lead, Precision Medicine, World Economic Forum
The webinar will last one hour and will be held on Wednesday, April 22, 2020 at 12:00 pm EDT and will last for one hour. Anyone who is interested is encouraged to take part, and even if you can’t make the live webinar, you should sign up anyway so that you can have access to a recording of the conversation later.
It is more important than ever that stakeholders in the rare disease world listen to one another and stick together to help the most vulnerable. If you would like to sign up for this webinar, click here.
