We will update this space every 1-2 weeks or as applicable with news and other resources that are specifically related to patients with Cushing’s, adrenal insufficiency, and rare diseases in general. We’ll do our best to keep it in chronological order with the newest on top. Please maintain your distance, wipe everything down, learn to love home cooking, and stay safe!!!
The European Journal of Endocrinology accepted a manuscript for publication on April 20, 2020 with the running title “Cushing’s management during COVID-19”, authored by Drs John Newell-Price, Lynnette K. Nieman, Martin Reincke, and Antoine Tabarin. These international doctors (UK, US, Germany, and France, respectively) combined forced to create this guideline for treatment and management of Cushing’s during the current pandemic. Click here to read it and feel free to share it with others including local / less experienced doctors who might have an even more difficult time trying to figure out what to do right now.
The European Journal of Endocrinology also published a manuscript the same day with the running title “Adrenal insufficiency management during COVID-19” authored by Drs Wiebke Arlt, Stephanie E Baldeweg, Simon HS Pearce, and Helen L Simpson. Click here to read it and feel free to share it with others including local / less experienced doctors who might have an even more difficult time trying to figure out what to do right now.
The National Organization for Rare Disorders (NORD) has launched a rare patient emergency financial assistance program. They are currently looking at a max of $1K per patient and are asking for detailed e-mails at this time while they work out the logistics. Click here for more information.
Pituitary World News (PWN) has assembled these tips and tools for counteracting stress and promoting well-being. UPDATE April 18 2020 – Drs Kevin Yuen and Lewis Blevins joined PWN co-founder Jorge Faccinetti for this podcast to discuss the susceptibility of pituitary patients to COVID complications and best practices during this unsure time.
Global Genes has assembled a colossal page full of resources for patients.
Adrenal Insufficiency United has been communicating with Pfizer and Greenstone, makers of Cortef, SoluCortef, and generic hydrocortisone. Patients with adrenal insufficiency have reported shortages of certain dosages of the generic hydrocortisone, and Pfizer has issued this clarification letter to specify that the name brand product has no shortages and they are working with their subsidiary to resolve the shortages of the generic by the end of the year.
Artist Juan Ramiro Torres brought together dozens of artists around the world for a project called Love and Hope from Artists at Home. The results are a source of solidarity and community that we hope you can tap into for a distraction, or inspiration to go create something yourself.
Asesoramiento para pacientes con síndrome de Cushing o insuficiencia suprarrenal, de la Dra. Elena Valassi en el Hospital Sant Pau en Barcelona, España.
The World Health Organization has created an amazing dashboard of resources that include Mythbusters, an up-to-the-minute ticker tracking infections across the globe, other countries’ responses, videos, information on clinical trials, and more. If you’re on Facebook, consider following them. They have been putting out interesting, high quality graphics daily.
The European Society of Endocrinology has assembled easy links to COVID-19 updates from WHO, CDC, NIH, and more. They also have a thorough statement that covers the connection between greater risk of complications for patients with diabetes, obesity, undernourishment, and/or adrenal insufficiency.
WebMD consulted the CDC and FDA to put together this chart about how long the virus can survive on various surfaces.
The Endocrine European Reference Network has assembled a page with numerous updated resources primarily for people who live in Europe, but a lot of it pertains elsewhere, issued March 31, 2020.
The National Organization for Rare Disorders (NORD) keeps an updated resource page on topics related to rare disease patients and issued a joint statement with EURORDIS-Rare Diseases Europe regarding the use of orphan drug status to develop treatment for COIVID-19, updated March 30, 2020.
The Pituitary Foundation in the UK updated their statement and resource page (original March 23, 2020), issued March 27, 2020.
The National Adrenal Disease Foundation (NADF) issued this statement regarding adrenal crisis on March 13, 2020.
The National Health Council issued this statement on coronavirus preparedness for people with chronic diseases on March 13, 2020.
The Society for Endocrinology in the UK issued this advice statement for patients at risk of adrenal crisis in this period of risk of the novel coronavirus on March 11, 2020.