Monday 25th May
Call for Questions
The next webinar in our coronavirus update series will take place on Thursday 11th June.
As we are starting to see some of the lockdown restrictions lifted, we know you’ll have questions and concerns about the road to recovery. If you have any questions that you’d like our expert panel to address, please email them to email@example.com by 5pm on Friday 29th May.
More details about the webinar, including the time and how to join, will follow soon.
Tuesday 21st April
The recording of our webinar ‘Facing Coronavirus Together: Tapping into the Resilience of the Rare Disease Community’ can be found here.
Monday 20th April
The British Paediatric Neurology Association Update
The British Paediatric Neurology Association (BPNA) has developed a guidance document regarding the management of paediatric neurology patients during the coronavirus pandemic. You can view the advice here: https://bpna.org.uk/_common/show_unpro_doc.php?doc=Covid19andPaediatricNeurology20200417_242ca380def669e6d61d20b0c72eade8.pdf
Thursday 16th April
It is likely that most (but not necessarily all) adult patients with Nephropathic Cystinosis will be in the “highly vulnerable” group. Advice about isolation and shielding changes frequently; and so the government website should be consulted: https://www.gov.uk/coronavirus
Adults may encounter more complications than children. If they get painful and persistently red eyes, they may need to contact their local eye department to see if they need an urgent review. Otherwise, continuation of existing ocular medication is required.
As for children, Cystinosis is not a condition that predisposes to more severe disease. However, as with any infection, if they do become ill, especially if they are unable to tolerate fluids, there is, of course, an increased risk for dehydration and worsening electrolyte abnormalities for which they may need to be seen and may benefit from IV fluids. This is not specific for COVID-19; but true for any infection.
We recommend visiting the following website, which is updated frequently with advice from specialist societies, for further guidance: https://www.kidneycareuk.org/news-and-campaigns/coronavirus-advice/
Your local Nephrology team will advise you about supply of medications including Cystagon and eye drops, which you should continue to take as usual. Home delivery services may have to be activated for those not already using this system.
Thursday 9th April
Webinar: Facing Coronavirus Together: Tapping into the Resilience of the Rare Disease Community.
Our next webinar will take place on Tuesday 21st April, 12.30-1.30pm BST
The link to join the webinar on the day is: https://zoom.us/j/647190348
We are working with Duchenne UK and IMD Clinical Psychologists to share the top 5 tops for helping parents and carers, and the top 5 tips for helping your children through the lockdown. There will be the opportunity to ask any questions about the best way to cope during the current crisis and extended period of isolation.
A recording will be available afterwards for those unable to join us live.
Wednesday 8th April
Newborn Screening and Bloodspot Testing during the Coronavirus Crisis
We have contacted Public Health England and received the following communication in regards of Newborn Screening and bloodspot testing.
Newborn Screening should be continuing as usual. All babies should be receiving their screening test on time (wherever possible), and those that test positive should be referred as per usual pathways. Contingency planning is underway with the laboratories to prevent any delays.
Parents should continue to accept screening, and they should expect any screen-positive babies to receive the usual standard of care that would normally be provided.
Public Health England will be monitoring the situation so, may take different action if notified of any significant issues.
If you have any concerns or would like to raise any issues please contact us
Thursday 2nd April
Statement regarding the impact of coronavirus (covid-19) on the asfotase alfa (Strensiq) Managed Access Agreement
NICE and NHS England and NHS Improvement have taken advice from clinical experts to review the potential impact of COVID-19 on the delivery of the Managed Access Agreement (MAA) asfotase alfa (Strensiq) for treating paediatric-onset Hypophosphatasia (HPP) [HST6]. This statement sets out considerations for patients who are already receiving treatment and those patients who have not yet started treatment. For more information please click here.
Monday 23rd March
The recording of our webinar on Inherited Metabolic Disorders and Coronavirus can be found here.
Wednesday 18th March
Ibuprofen and coronavirus
There is currently no strong evidence that ibuprofen can make coronavirus (COVID-19) worse. But until we have more information, take paracetamol unless your doctor has told you paracetamol is not suitable for you. If you are already taking ibuprofen or another non-steroidal anti-inflammatory (NSAID) on the advice of a doctor, do not stop taking it without checking first.
1) Paracetamol is the first line choice
2) If this is not effective, or you cannot obtain any paracetamol then ibuprofen remains the second line treatment for most people for a high fever (there may be some people with asthma or heart disease who have been specifically advised to avoid it).
3) Remaining well hydrated is important.
4) An adult who is otherwise reasonably well, may not require specific treatment (other than trying to stay comfortable) for a low grade fever.
5) In children (particularly younger children) and patients with Glutaric Acidura Type 1 (GA1) treating the fever would be considered the important thing to do (as the risk of uncontrolled fever would be deemed higher than any smaller potential risk of ibuprofen). If in doubt, contact your metabolic team.
Tuesday 17th March
Statement from Nutricia for IMD patients requiring medical nutrition
We know that many people rely on our products and we take this responsibility very seriously. We would like to reassure you that the availability of our products and the continuity of patient care through our Nutricia Homeward Service is a priority.
We are fulfilling orders as usual and have supplies for everyone who has been prescribed our products. Please continue to order your products in their usual quantities as this will help you, and everyone else, get regular, uninterrupted supplies.
We have been monitoring developments closely since the beginning of the COVID-19 outbreak and working hard to ensure the continuity of our products and services. We are in regular dialogue with our factories and suppliers so that we are in the best possible position to respond quickly to the evolving situation.
We recognise this is an extremely anxious time for everyone so please be assured we are doing everything we can to make sure that you get the products you need.
Thank you for your patience.