In 2015, the European Haemophilia Consortium launched a programme to cater for people with haemophilia that have inhibitors on a European level as the numbers of people with inhibitors nationally are often too small to make a meaningful impact and to advocate effectively.
The objectives of the programme were to understand the needs of people with inhibitors and to find ways tomeet those needs; build a community of people with inhibitors along with their families and caregivers; allow mutual support, education and empowerment through online and face-to-face exchanges.
The programme also sought to provide people with inhibitors with the information, education and advocacy training to engage directly with decision-makers. Finally, it was the objective of the EHC to work closely with medical experts towards a framework for treatment and care that could possibly bridge the gaps of inhibitor treatment in Europe and ensure that every person in Europe who has haemophilia with inhibitors can receive appropriate treatment and care.
In 2022, the EHC Inhibitor Working Group evaluated the achievements of the inhibitor programme and came to a conclusion that largely the initial objectives have been met and it is time to set new goals and to capitalise on the achievements of the network.
People with haemophilia who have inhibitors have seen a harmonisation of their care, and the establishment of a well connected and immensely supportive community, and those with haemophilia A and inhibitors – the advent of novel and life-changing treatment options. Meanwhile, those living with ultra rare bleeding disorders, such afibrinogenemia or platelet disorders, are still in an extreme vacuum with a lack of information about their condition and treatment options, and they may also carry the heavy burden of isolation and loneliness in terms of their inclusion in the bleeding disorder community.
For these reasons it was decided to expand the network built for and with people with inhibitors to work on a better inclusion of people with ultra rare bleeding disorders. Thus the European Rare and Inhibitor Network (ERIN) was born.
To best serve the needs of all this encompassed in the ERIN, a three-fold route will be taken.
Track 1: providing information, education and training to people with ultra rare bleeding disorders.
Track 2: Ensuring the transfer of knowledge into the local inhibitor communities.
Track 3: Advocacy, and better treatment and care for all.
Objectives of ERIN
- To better understand and prioritise the needs of people with ultra rare bleeding disorders both at a community level as well as at a policymaking level;
- To empower people with ultra rare bleeding disorders to drive the research in the field of ultra rare bleeding disorders thus taking steps to improve the treatment and care for these patient cohorts;
- To enable social and intellectual connections between people with ultra rare bleeding disorders and between their respective caregivers to allow them to mutually support and educate one another; and
- To ensure that people with ultra rare bleeding disorders themselves are also active and effective at engaging directly with decision-makers to ensure that they receive the treatment and care that they need.
- To continue offering the necessary support to people with inhibitors and their caregivers, ensuring the transfer of knowledge to local inhibitor communities.
However, the above-mentioned are only our initial ideas. Following the completion of a needs assessment, we will finalise the goals, objectives and components of this new programme, and start to work. Therefore your views and input at this stage would be most valuable and we look forward to hearing from you! Do not hesitate to share them with the EHC Community Development Lead Kristine Jansone!
Help us with the needs assessment
Are you a person with an ultra-rare bleeding disorder? Do you know somebody else with an ultra-rare bleeding disorder? Are you a caregiver/ parent/ friend of a person with an ultra-rare bleeding disorder? Are you a healthcare professional that treats a person with an ultra-rare bleeding disorder?
Please help us reach out to people with ultra rare bleeding disorders to assess their needs and share the link to the needs assessment survey with them!
Over the years of activity of the European Inhibitor Network, we have collected and shared a good amount of knowledge, information and good practices. Those can be found on inhibitor.ehc.eu
In the mean time one to the most urgent unmet needs for the population of the ultra rare bleeding disorder patients is more knowledge about their bleeding disorder. We have started to gather information and resources, but this work is only in the beginning.
The participants of the first European Rare and Inhibitor Network (ERIN) Summit that took place from 1-4 December 2022 co-created and signed ERIN Manifesto outlining needs that they have as a community affected by haemophilia with inhibitors and extremely rare bleeding disorders, the challenges they face in having those needs met and support that they require to have this needs met on European and national levels.