Coronavirus (COVID-19) & Pompe Disease

The Association has been in contact with both Genzyme and Amicus in regard to the Coronavirus emergency. Sanofi has released a statement on  the update on production of Myozyme.

https://www.reuters.com/…/us-health-coronavirus-sanofi-idUS…

The Association has also been in discussion with Dr Tchan at Westmead hospital in Sydney, who tells us that appointments may need to be amended due to the changes on the ward to allow for the appropriate spacing between treatment chairs. We understand that spacing of chairs may be an issue in a number of other treatment centers.

Dr Tchan also advised that as the emergency develops other changes will need to be made in regard to treatment. As the situation changes weekly, daily, hourly, we will endeavor to keep our members updated by email.

We all need to be aware that as Pompe patients, many of us are in the high risk category and going to hospital for your infusion may put you at risk. These include transport, taxi, Community transport, public transport and the other patients in the hospital. If you have any concerns please talk with your treating centers.

If you are on the Amicus trial and can’t for any reason get to the hospital for your treatment, we are advised that the trial protocol allows for a patient to miss a treatment and again please check with you treatment center. Statement by Amicus regarding clinical trials here

There is lots of information on the web on the virus, the official sites that the association is relying on are below

World Health Organization

Federal Department of Health

Beyond Blue- mental health. Support. Advice. Action.

Individuals who are concerned that they may have been exposed to COVID-19

Call the National Coronavirus Health Information Line on 1800 020 080 or your local state or territory website listed below.

 

New South Wales

Victoria

Queensland

South Australia

Western Australia

Tasmania

Northern Territory

Australian Capital Territory

 

The latest statement from Dr Kishnani from Duke university.

Q & A with Dr. Priya Kishnani (Duke University*) on COVID-19 and Pompe Disease

 

 

Inherited Metabolic Disease & Coronavirus (COVID-19) Webinar [23rd March 2020]

The following webinar focuses on how those affected by inherited metabolic diseases may be impacted by the coronavirus (COVID-19) outbreak.The webinar was organised by patient organisations working in the field of Inherited Metabolic Diseases (IMD) with the aim of addressing questions and concerns raised by the IMD community. The webinar was recorded live on Monday 23rd March; you can access the recording via the link below. Many questions were received during the webinar, we will aim to answer these in the coming days and to update the information shared, in line with current advice and guidance. Many thanks to all speakers and contributors for sharing their valuable time and experience with our community.#COVID19 #Webinar #LSDCollab #MetabolicSupportUK #BIMDG

Posted by UK LSD Collaborative on Monday, 23 March 2020

 

 

October Australian Pompe Conference & COVID-19

We have suspended planning for our 2020 Pompe forum in Adelaide but please keep the dates of 9th to 11th October free and we will advise you later in the year what is happening.

As always any questions or concerns about treatment or care please call or email any members on the committee.