This pandemic has been worrying, stressful, debilitating and upsetting, but together we live in hope and support each other across the country. Stay updated, stay inside, stay safe.
April 2020 – The Genetic Alliance set up an online hub here, aimed at those affected by genetic, rare and undiagnosed conditions, to share information related to Covid-19.
MP Vicky Ford shared an open letter from the government to families of SEND children, stating the government’s desire to protect them and what measures had already been taken to support them. You can read this here.
The World CDG Organisation issued a letter to address more specific questions from the CDG community, including whether children were at risk, whether any CDG families had been directed affected yet, and what to do in the case of a suspected infection. Click here to view.
Further information and reassured was issued by Genetic Disorders UK, here
The CDG UK community have our own hand-made face masks available for free, thanks to Karen Lesley. She is a whizz on the sewing machine and researched the best type of homemade masks on the internet. The masks are completely free to CDG patients and members of their households, and if you would like some please use the Contact Us page of this website or email firstname.lastname@example.org direct. (Please note these masks are not official PPE, and have not been legally tested. They must be washed straight away after being worn out in public, and filters can be bought on ebay or Amazon for extra protection. The elastic goes around the head, and if too loose a knot can be tied in the elastic to tighten it. Wearing a mask does not trump the benefits of social distancing but may help protect the wearer from infection.) Huge thanks to Karen for this initiative, and to her friends Carolyn and John, for contributing to the purchase of the CDG green material. What a wonderful effort!
Unique shared some helpful information about self-isolating here.
CDG UK received this letter from Eurordis:
“Dear Members, Volunteers, Partners, Friends,
On behalf of EURORDIS-Rare Diseases Europe, we would like to express support for those individuals and families already directly affected by COVID-19 around the world. We stand in solidarity with everyone affected by the pandemic. Our thoughts are with all vulnerable populations, people with underlying health conditions and weak immune systems, the elderly, and every other affected community.
We are conscious of the stress the pandemic is causing on people living with a rare disease, your families and your organisations. Protective measures and containment may make it more difficult for you to go to hospital appointments or get medicines at the pharmacy, may disrupt the organisation of the specialised healthcare services or generate medicine shortages, may hinder some clinical trials or result in more difficulties that we cannot yet anticipate.
We will continue to closely follow developments in the situation, particularly those that have specific implications for the rare disease community (such as disruptions in supply of medicines and medical devices) and to liaise with ERN coordinators in order to identify issues which will require special attention.
The commitment of healthcare professionals and pharmacists is an inspiration, bravely fighting the virus on the frontline whilst still often caring for their other patients with chronic conditions.
In the face of isolation and uncertainty, now is the time to pick up the phone, make a video call and stay in touch with each other. We are here for you. Don’t hesitate to contact a member of the EURORDIS team by email or to set up a video conference call online. Mutual support is key.
The experience of rare diseases is one of resilience and agility. The rare disease community has emerged with, and built its strength on new information technologies, the Internet and digital networking. We lean on the solidarity of this community, which has existed for decades across borders, to come together virtually to comfort each other and move forward with our work. Follow us on Twitter, Linkedin, Facebook and Instragram.
The safety of our staff, volunteers and Board of Directors is paramount. Our staff is now working from home in Belgium, France, Germany, Serbia, Spain, Switzerland and the UK, as we continue to adapt our working methods and activities for the next weeks and months. Their determination is key and we thank all colleagues for their dedication in this unprecedented situation.
We continue to adapt out events to the current situation. Last week, the EURORDIS Winter School took place online instead of in Paris. And the decision has been taken to move the European Conference on Rare Diseases & Orphan Products 2020 online in May. The health and safety of all stakeholders participating in ECRD is our primary concern. We look forward to seeing those of you who had already registered on the new online platform, and hope those of you who were previously unable to attend will now join us online.
Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.· World Health Organization· European Centre for Disease Controlo National information resources for the public on COVID-19o US Centers for Disease Control and Prevention.“
March 2020 – Some families have already started to self-isolate in order to protect family members with vulnerable immune systems.
The World CDG Organisation released this statement. This confirmed that those living with neurodevelopmental conditions may have an increased risk of having serious COVID-19 infection-related manifestations.
“Currently, there is no data pointing to whether ALL CDG patients are at higher risk of more severe disease from COVID-19. However, most CDG patients have complex medical conditions. Also, some CDG have immunodeficiencies or other immunological issues. Hence, COVID-19 infection may trigger other clinical complications or present a more severe course in CDG
They shared recommendations on appropriate protective measures here (page 3 in particular relates to families). They stressed the importance of remaining calm but alert to danger, excellent hygiene, and avoidance of crowds and hospitals where infection may be more prevalent. You may also find the FAQs on pages 3 and 4 of the statement useful when relating the information to your family.