2020 has been an extraordinary year. Not only because it has been the start of a new decade, but also because the majority of it has been hijacked by the COVID-19 crisis, and looking into the short-term future we are not promised a swift return to what the lives that we are used to.

The bleeding disorder community, including the EHC itself, has had to adapt to what can be now be seen as our new normal, we have had to find ways to keep working, to stay in touch and to remain healthy, both physically and mentally.

In this situation of unexpected change and adaptation, we witnessed once more with a great sense of pride, the most resilient and resourceful community! Having browsed through the websites and social media of our NMOs, we have discovered a great variety of things that are being offered to the members of the community during the current crisis.


The new normal

EHC itself has had to adapt to this new situation by finding new ways of working, starting from the office presence to the event organisation to communication with our members. Alongside the resource page on COVID-19, EHC is also organising its committee work online and most of the events are being reorganised to fit in with the virtual environment.

In light of EHC working in new ways, we would also like to remind our members that the EHC Community calls will take place today (Wednesday 20th May) at 18:00 CEST (in English) and on Friday 22nd May at 14:00 CEST (in Russian)! Contact your NMOs for the dial-in instructions! We look forward to see you all soon!

Above all, we are very keen to pass on a hugely important message from the Medical Advisory Group (MAG) of the EHC. Despite the current situation that we are in where we are largely asked to stay at home and limit our activities, it is vital that patients are encouraged to seek medical attention and treatment in the HTCs if they suspect a bleed. You can do this while observing all the safety measures – call ahead, bring hand sanitizer and a face mask, but do not avoid going to the HTC if you feel necessary – this may help avoid bigger and possibly irreversible issues!


Information, support and resources about COVID-19

Many of the EHC National Member Organisations provide their membership with information and education about COVID-19 and its impact on the bleeding disorder community, including guidelines for people with bleeding disorders in pandemic situations and information about risks. Both, on the websites and social media, as well as in different formats – articles, infographics, videos and live webinars, the NMOs are providing information about modalities of operation during this crisis, as well as measures of deconfinement.

A remarkable action has been carried out by the Ukrainian Hemophilia Association – personal protective equipment was provided for medical staff of haematology departments, where patients with haemophilia and other bleeding disorders are visiting. In total, assistance was provided to 41 regional departments of haematology and onco-haematology for both children and adults.

Establishing home delivery of the treatment products

While in many countries home delivery is part of the comprehensive care system, there are  countries where this is not the case. In the true spirit of making lemonade when one is being given lemons, some of the EHC NMOs used the current situation to establish home delivery of treatment products for patients with bleeding disorders. While being successful on a temporary basis of the confinement, the NMOs are determined to push for this to become a permanent standard in their countries.

The EHC is prepared to support its NMOs in these efforts by issuing advocacy and support letters to the official bodies in the respective countries.

Remaining fit and healthy

One of the most challenging aspects of the confinement, has been the maintenance of physical fitness and activity, mental well-being, as well as the ability to engage in healthy community experience. Many of our NMOs focused their efforts exactly on these areas, by providing exercise sessions and community building activities when it is impossible to get together physically.

Many of the NMOs have offered online sessions of physiotherapy, as well as more specific things, such as yoga or pilates. Even though, these sessions are in various languages, it may still be worth having a look for the inspiration, for example: Physiotherapy session from the Israeli NMO, Physiotherapy webinar from Belgian NMOphysiotherapy YouTube channel of Italian NMO. Also, EHC’s #thisway campaign may be worth mentioning!

Some of the NMOs are also organising simple community events online, both to keep engaged, informed but also to simply keep in touch, have fun together and enjoy the company of each other.

Keeping up the events and activities

Much of the work of the NMOs consists of bringing the community together to inform, educate and empower. Similarly to the EHC, NMOs have been forced to find ways to maintain this as part of their activities. Our NMOs have been extremely successful in organising webinars and online meetings both specifically dedicated to the COVID-19 situation and covering other themes that would have been part of the day-to-day focus of NMOs including bleeding disorder treatment and care.

Unfortunately, confinement coincided with this year’s World Haemophilia Day celebrations, which for many NMOs is one of their main events of the year. Not being able to gather to mark the day in person, many NMOs found creative ways to bring together the community, say thank you to the healthcare professionalsand share messages of resilience from the bleeding disorder community to the general public.

Sharing information

Finally, where it has been difficult to organise, NMOs are still making an effort of informing their membership of the ongoing online activities of others, the NMOs, the EHC and the WFH. It is not always possible to organise something nationally, but we encourage our NMOs to use this opportunity of moulding our new normal to suit our needs, instead of adapting to it and explore the regional cooperation online and possible activities for countries that share the same language groups.

Having seen all the great initiatives, we would definitely love to hear more about your practices, the ways you have adapted or indeed created this new reality to benefit your community, so please do get in touch with us, let us know and share with us so we can share with our broader community!

We also encourage you to visit each other’s websites and social media to get inspired for new approaches and ideas – there are a lot of great things out there!