About the EIN Pre-Conference workshop

What: EIN Pre-Conference workshop “Finding ways for better inclusion of people with inhibitors in the life of the NMO”

When: On 3 October 2019

Where: Skopje, North Macedonia

Language: English with live Russian interpretation

For whom: Open to EHC National Member Organisations (NMOs) only

For more information: Write to Kristine Jansone (kristine.jansone@ehc.eu)

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The programme of the workshop will include scientific sessions about haemophilia B and inhibitors, and novel treatment products; a workshop and discussion exploring the improvement of collaboration with the treatment centres; and practical work on strategically planning the involvement of people with inhibitors in the work of the NMO.

As other EHC community-oriented events, this workshop will seek to be as interactive and engaging as possible, and aim to provide ideas, examples and tools for the inclusion and involvement of PWI while also offering peer support and stimulating cross-border initiatives.

The workshop will be held in English. However, this year we will make simultaneous interpretation into Russian available to facilitate the participation of our Russian-speaking NMOs.




To register, please contact your NMO. The registration deadline is Friday, 19 July 2019.

We kindly invite you to send 2 representatives from the below categories:

  • One senior NMO leader (e.g. President, Vice-President, Board Member, CEO)
  • One person with inhibitors (or their caregiver) from your NMO community who is committed to helping achieve better inclusion of PWI in your NMO. If there is an Inhibitor Ambassador in your NMO, he/she would be the right person to attend in this category.

For the best outcome of the workshop for the NMO it is essential that both of these categories are represented.



Please note that the EHC will cover the following costs:

  • For the PWI: the accommodation for the duration of the workshop; travel costs to Skopje; and registration and accommodation for the EHC Conference if they wish to attend.
  • For the NMO leaders (if they are already attending the EHC Conference): the accommodation for the duration of the workshop (as the other costs will occur in the framework of the EHC Conference).

These expenses will be reimbursed according to the EHC travel reimbursement policy, which is briefly outlined in the following paragraph. For the registration procedure, please see below!

 We ask our participants to take care of their own travel arrangements and we will take care of the accommodation booking. Travel will be reimbursed after the event and only if the volunteer/s attends the event. This is why we strongly suggest that you and your volunteer/s purchase travel insurance when purchasing your/their flights in case of last minute cancellations. If you or your volunteer/s will not attend the event, we will also invoice the hotel bill to your NMO, if we cannot use the room for other participants or cancel it for free.

Additionally, please note that we will only reimburse up to the limit of the amount provided by our Conference Organiser, Niav Miller. Niav will get in touch with you and your volunteer/s to give the budget for which we will reimburse your travel. If you cannot find travel for the given budget please get back in touch with Niav and let her know, she will give you a new figure. We will NOT reimburse travel that is above the budget limits provided by Niav, so it is very important that, if you cannot find travel arrangements for the given amount, you come back to Niav and ask for a new amount.
Finally, we only cover economy class fares and our policy is to prioritise cheapest flights, airlines and public transport over taxis  for transfers between airport and event venues.If for some reason (e.g. reduced mobility, very late or very early arrival or departure) you cannot take public transport, please let us know in advance. We will not systematically reimburse taxi fares and therefore it is important that you tell us if you plan on taking a taxi and why. If you take a taxi unexpectedly due to unforeseen reasons, please give us your reason when submitting the taxi receipt.


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