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Inhibitor news

Home > Archive for Inhibitor news

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

Women in the inhibitor community

“My bleeding disorder was only discovered and got a name when I was six years old, in the year 1956. The biggest problem for me has been the bleeds into the joints, from which,...

Read more March 5, 2020 at 11:17 am Kristine EHC

EHC proudly launches European Principles of Inhibitor Management in video format

EHC is pleased to launch European Principles of Inhibitor Management in video format. This production is the culmination of two years of collaborative work by multidisciplinary care professionals from the EHC and EAHAD networks,...

Read more February 13, 2019 at 9:19 am Kristine EHC

Inhibitor Ambassador video-conference! 12 February 2019

We think it is essential that people with haemophilia who have inhibitors receive the necessary information, support and education, as well as make their voices heard in order to receive the optimal treatment and...

Read more January 17, 2019 at 3:15 pm Kristine EHC

ROCHE statement on Hemlibra® (emicizumab) safety findings

  Hemlibra® (emicizumab) Update March 28, 2018 Given the recent dialogue, we are reaching out to clarify the facts surrounding five people with haemophilia A with inhibitors to factor VIII who have passed away...

Read more April 3, 2018 at 11:57 am Raia Mihaylova

Ask the Expert – Answers on Venous Access are now published!

Q: What is the recommended venous access device in people with inhibitors: port-a-cath, Hickman line, shunt, other? A: There is no recommended venous access device for people with haemophilia with inhibitors. The decision should...

Read more February 22, 2018 at 4:33 pm Raia Mihaylova

Call for Inhibitor Ambassadors

To further fill the European Inhibitor Network programme with high quality relevant content, as well as further connect people with inhibitors and their caregivers across Europe, it is essential to collaborate closely with the...

Read more February 22, 2018 at 3:06 pm Raia Mihaylova

Winner of the ‘Inhibitor Superhero’ competition announced

Inhibitox is the new superhero that will soon inhabit the community platform and “fly-in” with helpful information and facts to accompany the website content throughout the different pages. Nine-year-old Isaac Miller from the UK...

Read more January 5, 2018 at 4:25 pm Raia Mihaylova

EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) publishes its review on risk of inhibitor development in PUPs from two classes of FVIII medicines

Read their conclusion here .

Read more June 6, 2017 at 12:16 pm Raia Mihaylova

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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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