covid-19

A Statement from Executive Director, Lisa Butler, with regard to COVID-19 and Planning Ahead

We are all in this together, and the GBS|CIDP Foundation International will make every effort to keep our community informed and updated. As we all navigate our way through the COVID-19 outbreak, it is important for the health of ourselves, families, and communities, to not only abide by best practices for prevention of the spread of the virus but to also try and manage our emotions and stress response as much as possible. Thinking clearly, acting calmly, and following the advice of reliable health and wellness experts will guide us through the days and weeks ahead, and inspire others to do the same. Being supportive to relatives, friends and neighbors is something this community does well every single day, and we need to rely on our Foundational pillar of support now more than ever.

Please be assured that we take this public issue seriously but this doesn’t mean we will shut down. As we transition to more virtual or digital programming, we are still here for your phone calls and emails. COVID-19 doesn’t mean our community is no longer dealing with GBS, CIDP or variants, we are still here for you through this pandemic and will continue to provide updates through email, social media and on our website. As we adapt to this pandemic, we are postponing ALL IN-PERSON events as of today through May 15, 2020. COVID 19does NOT cancel us, we will just look forward to seeing you at a later date. Check the website for continued updates.

For more information please see the National Health Council’s March 13 Webinar on Coronavirus Preparedness for People with Chronic Diseases:

WATCH: Coronavirus Preparedness for People with Chronic Diseases Webinar: COVID-19 is causing significant concerns globally. Watch the recording of our webinar from Friday, March 13 here. The speakers discussed the ways patient groups can assist their members and other constituents in reducing the impact of COVID-19, such as how patients with chronic diseases can avoid the illness, what to do if they feel sick, and how patient groups can prepare to field inquiries from their members. Watch it here and visit NHC website for more information. Also in light of the pandemic, here is a link to a video of Italians sharing what they would tell themselves 10 days ago.

Please also take a moment to view: Managing Stress & Anxiety and advice from Dr. Julie Rowin regarding an easy and accessible way to manage stress during challenging times. 

In good health,

Lisa Butler
Executive Director
GBS|CIDP Foundation International

Resource from PPTA Regarding COVID-19

The Plasma Protein Therapeutics Association (PPTA) has provided a statement specific to plasma protein therapies in light of the COVID-19 pandemic. CLICK HERE to read the statement.

The PPTA notes that their Pathogen Safety Steering Committee continues to monitor the situation and is currently working on a broader update for the community. We will share these updates with you.

If you have any other questions regarding plasma supply and COVID-19, please email info@gbs-cidp.org.

A statement from the GBS|CIDP Foundation regarding the COVID-19

The coronavirus COVID-19 situation is evolving rapidly. In the interest of concerns and questions that the Foundation is receiving regarding the spread of the coronavirus COVID-19, the GBS|CIDP Global Medical Advisory Boards offers the following statement:

GBS, CIDP and variants will not put patients at any higher risk of contracting the COVID-19, but those who are treated with chronic immunosuppressive drugs (steroids, Rituxan, Cytoxan, Immuran, etc.) may have compromised immune systems with risk of increased susceptibility to (any) infection, such that they should be extra vigilant about reducing exposure to others who might have any infection (this is true regardless of coronavirus).

Whether or not you are coping with the GBS, CIDP or variants of these conditions, the following precautionary steps are highly recommended:

  • Wash your hands as thoroughly and as often as possible.
  • Follow best practices for general health and wellness such as getting plenty of rest, stay hydrated and continue a well-balanced diet including fruits and vegetables.
  • Avoid touching public surfaces and reduce the amount you touch your face.
  • Avoid crowds and public events.
  • Wear a mask if you have a fever or cough and stay at home if possible until it subsides.
  • If you develop symptoms of fever with cough or shortness of breath, please contact your primary care physician.

We encourage anyone looking for further information to seek reliable news sources. The Foundation relies on the Center for Disease Control for updates on COVID-19. Their website can be found here: https://www.cdc.gov/. We will provide updates as information is made available.

Other reputable resources:

3/12/2020 – The Plasma Protein Therapeutics Association (PPTA) has provided a statement specific to plasma protein therapies in light of the COVID-19 pandemic. CLICK HERE to read the statement.