Open Letter to EHC And Its Members

In October of this year, the leadership of the European Haemophilia Consortium undertook a trip to the Russian Federation. Although the primary purpose of the visit was humanitarian, aiming to support local haemophilia organizations in obtaining better treatment conditions, representatives of the EHC also met with Russian government officials during the trip.

Given that the trip prompted a strong dissenting reaction from many member countries, we also consider it important to issue a statement on this matter.

While many member countries sought to initiate a discussion on this planned trip at the EHC General Assembly in Sofia, the EHC leadership did not permit open debate. Since we consider the European Haemophilia Consortium primarily as an association of national patient organizations, where we expect the implementation of democratic principles in decision-making processes, we have decided to express our clear opposition, both to the trip itself and to the leadership’s decision to prevent public debate on this topic. The entire Board of the Czech Haemophilia Society unanimously agreed on the text of our statement.

Dear Chairman and Members of the Executive Committee of the European Haemophilia Consortium (EHC),

On behalf of the Czech Haemophilia Society, I express our deep concerns regarding EHC leadership's recent visit to the Russian Federation. Given the significant concerns raised by multiple member countries at the Sofia General Assembly, we believe it would have been prudent for this matter to undergo thorough, transparent discussion to avoid the division among EHC members that has ensued. We find the subsequent response from member countries, given prior objections, to be foreseeable rather than surprising.

We appreciate the intent to support haemophilia patients in Russia; however, this visit's alignment with Russian state interests has understandably raised concerns. The event was used for propaganda, reportedly including an unplanned meeting with a government official. The Czech Haemophilia Society, as a committed EHC member, dissociates itself from this visit, viewing it as an action made by individual leadership rather than as representative of all members. The attention given by the EHC president to this concern is appreciated, but stronger adherence to open communication principles is vital to maintain trust within our community and uphold our shared values.

Some of our members and prominent health professionals have also voiced their unease, emphasizing the importance of sustaining trust and unity within the EHC. We expect leadership to treat this matter with due care and attention, as any future decisions should clearly align with the Consortium's integrity and collaborative mission. As Brian O’Mahony mentioned, we anticipate a prompt convening of the General Assembly and a constructive discussion that may lead to clear actions and a cohesive resolution.

Our goal remains to promote openness and a unified approach among EHC members, safeguarding our common values in the process.

Respectfully,

Martin Bohůn

Czech Haemophilia Society