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Author's Posts

Home > Posts by Kristine EHC

Peer-to-peer sessions restarting in 2022

Following the positive experiences in 2021, the European Rare and Inhibitor Network (ERIN) would like to continue the peer-to-peer sessions also in 2022.    Each year during the peer-to-peer sessions at the EHC Inhibitor...

Read more April 7, 2022 at 9:10 am Kristine EHC

Let’s move! Importance of physical activity for people with inhibitors

We think it has been a while since we moved all together! We think it is time!   Join us for a session on physical activity during “Happy 1/2 Hour with an Expert in...

Read more November 18, 2021 at 11:45 am Kristine EHC

Questions of Dental Hygiene

The very first “Happy 1/2 Hour with an expert in Haemophilia Care” took place on the 1 November 2018 and we did speak about the importance of dental care for people with inhibitors. This...

Read more October 5, 2021 at 5:06 pm Kristine EHC

Updates in treatment of haemophilia B and inhibitors

After a longer summer break the “Happy 1/2 Hour with an Expert in Haemophilia Care” is back! Join us today, 27 September 2021 at 19:00 CEST for a discussion about the updates in treatment...

Read more September 27, 2021 at 8:50 am Kristine EHC

Virtual EHC Inhibitor Summit 2021

Unlimited participants from each NMO! We are extremely delighted to invite you to one of the EHC’s most beloved events – EHC Inhibitor Summit. This event has had great success over the past years and...

Read more September 15, 2021 at 3:14 pm Kristine EHC

Last “Happy 1/2 Hour with an Expert in Haemophilia Care” before the summer break

Three years ago, in collaboration with the European Association for Haemophilia and Allied Disorders (EAHAD) we published the European Principles of Inhibitor Management (EPIM), outlining the optimal standard for treatment and care of inhibitors, focusing not only on the treatment,...

Read more June 24, 2021 at 7:44 am Kristine EHC

The Importance of Physical Activity During COVID-19 Pandemic

When the confinement first started more than a year ago, we did not think that it will last this long.  In the beginning of this extensive period everybody was more diligent in any things...

Read more April 16, 2021 at 1:20 pm Kristine EHC

Inhibitor Connection. People with inhibitors in the life of their NMO.

Since the beginning of the European Inhibitor Network (EIN), we have been asking what is the role of people with inhibitors and their caregivers in their own National Member Organisation (NMO). Is there enough...

Read more March 18, 2021 at 11:30 am Kristine EHC

EIN is launching peer-to-peer online sessions!

“The world is so empty if one thinks only of mountains, rivers and cities; but to know someone who thinks and feels with us, and who, though distant, is close to us in spirit,...

Read more March 3, 2021 at 1:40 pm Kristine EHC

How to Find the Light at the End of the Tunnel – Psychosocial impact of COVID-19

We have almost made a full circle of a year in the COVID-19 crisis situation. We have navigated through this almost blindly, but somehow we have managed. The only question is at what cost? Have we...

Read more February 18, 2021 at 12:29 pm Kristine EHC
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The European Inhibitor Network (EIN) is a multi-annual, multi-faceted programme that aims to better understand and support the needs of people with inhibitors (PWI), as well as their families and care-givers.

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Steffen Hartwig
Steffen Hartwig is a 32-year-old haemophilia B patient from Germany, with an inhibitor in the childhood (1999-2010). After six years (2006), the inhibitor comes back. He got an threatended compartment syndrom in an muscle bleeding in the left lower leg with three times hematoma clearing.
The high titre, or high responding, inhibitor continues until March 2010 with an inpatient stay for the administration of rituximaband subsequqnt ITI.
He work for an IT-Service-Provider and is a board member of the German Haemophilia Society.
Mirko Jokic
Mirko Jokic is actively involved in the Serbian Haemophilia Society (SHS), especially in the field of inhibitors. He initiated the establishment of the Inhibitor Group within the SHS, which deals with inhibitor-related topics and events. He is the coordinator of this group and works closely with other parts of the SHS. In addition, he is responsible for the online activities of the SHS, promotion and raising awareness on haemophilia through the social networks. Mirko himself is a PWI.
Miguel Crato
Miguel Crato has had severe haemophilia A with inhibitors since his youth. Currently, he is the President of the Portuguese Haemophilia Society and recently became a member of the EHC Steering Committee. According to Miguel, the European Inhibitor Network (EIN) is a very important step taken by the EHC in order to achieve a better way of communicating with people with inhibitors (PWI) and to evaluate their real needs and those of their families/caregivers. The online platform, as a part of the EIN, will provide good examples and useful tools to NMOs to create better level of integration for PWI within it.
Carl Fredrik Gustavsson
 
Hannele Kareranta
Hannele Kareranta is a 66-year-old eye doctor from Finland, who was diagnosed with von Willebrand Disease when she was six years old. She developed an inhibitor when she was 17 years old. Thanks to advanced treatment possibilities, she has done well and given birth to two healthy children, despite her diagnosis of von Willebrand Type III. She has been on the board of the Finnish Haemophilia Society and now is bringing her personal and organisational experiences to the IWG.
Jim O'Leary
Jim O’Leary is a 61-year-old haemophilia A patient from Ireland with a high titre, or high responding, inhibitor, which he developed at age 14 in 1970, just a few months after having his first cryoprecipitate treatment. Now retired after having worked for 20 years in the UK as a European financial controller, followed by a more sedentary job due to his reduced mobility, he is a board member of the Irish Haemophilia Society. He has been married to his wife Monica since 1983 and together, they have two sons and three grandchildren.
Teresa Pereira
Teresa Pereira comes from Portugal. She is a mother of two little boys, both with severe haemophilia A and inhibitors. They live near Lisbon. The haemophilia diagnosis was a surprise to Teresa’s family. Although it was later found that she was a carrier, until the first severe bleeding of her oldest son was reported, she never suspected she had a bleeding disorder herself. Teresa and her family are active members of the Portuguese Haemophilia Association. Teresa is also a member of the Portuguese Inhibitor Working Group, which organises meetings for this specific group in the haemophilia community.
Christina Burgess
Christina Burgess was formerly the Head of Services at the UK Haemophilia Society. She applied to be a member of the EHC IWG because her professional role already involved supporting people with inhibitors of all ages – children, teenagers and adults. Through her work she has gained a deep understanding of the issues a person with an inhibitor faces. Christina says that having an inhibitor is the last hurdle when it comes to care and the lives of people with inhibitors are often a roller coaster of uncertainty. Having originally trained as a counselor, Christina is currently setting up a counselling consultancy in the UK that will provide support specifically for people affected by bleeding disorders.

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