Community News

FARF Statement on COVID-19

Mar 13th, 2020

MARCH 13:

Due to the ever-evolving impact of the coronavirus pandemic, FARF staff will be working remotely for the next few weeks. While we are equipped with the necessary technology to continue meeting our mission and providing service, this will create minimal coverage in our office, so the best way to reach us is to email info@fanconi.org, or call and leave a voicemail 541-687-4658, and we’ll get back to you as soon as we’re able. Thank you!

MARCH 11:

The Fanconi Anemia Research Fund (FARF) is closely monitoring the updates regarding COVID-19, a respiratory illness caused by a new coronavirus, as well as the potential implications on the FA community. The severity of the illness and how many people may be affected is unknown at this time. We have a particular concern for those in the FA community who are immunocompromised. There is currently no vaccine to protect against COVID-19, and at this point, the best way to prevent infection is to avoid exposure to the virus that causes it. Stopping the transmission of the virus through everyday practices is the best way to keep healthy.

Because of the concern for transmission of the disease, we are preparing for the possibility that this virus may impact our two significant gatherings: the Annual Family Meeting at Camp Sunshine (Maine, June) and the Scientific Symposium held in conjunction with our Meeting for Adults with FA, (Texas, September). While it is too early to predict how these events may be affected, we want you to be aware that we are mindful of the risks associated with gathering at this time. We are in contact with Camp Sunshine regarding this matter. We will also be carefully monitoring the appropriate health authority recommendations for protecting against exposure provided by the Center for Disease Control and Prevention (CDC) and the World Health Organization (WHO).

The National Organization for Rare Diseases (NORD) recommends that you speak with your doctor to see how they may be able to advise you if you should become exposed to the virus. Finally, should you or a loved one need to travel, review the CDC’s travel notices to ensure you aren’t putting yourself or others at risk.

We will continue to monitor and follow guidance from the CDC and other agencies and communicate with the FA community directly as the situation develops.

Mark Quinlan
Executive Director
Fanconi Anemia Research Fund

Here are some resources with other information:

World Health Organization:

https://www.who.int/emergencies/diseases/novel-coronavirus-2019

CDC Centers for Disease Control and Prevention

https://www.cdc.gov/coronavirus/2019-ncov/about/index.html

The National Organization of Rare Diseases:

https://rarediseases.org/nords-peter-l-saltonstall-on-coronavirus-prevention-and-risk-for-the-rare-community/

National Institutes of Health

https://www.nih.gov/health-information/coronavirus