March 29 , 2022

IPOPI and the PID community unite in support of all people affected by the conflict in Ukraine

In light of the past weeks’ development in Ukraine, IPOPI has been collaborating closely with its National Member Organisations and stakeholders to support people with PIDs who are facing dreadful aggression of the Russian government towards Ukraine especially those fleeing the war-torn areas to neighbouring countries. 

In any situation of humanitarian crisis or armed conflict, people living with PID and other rare diseases face a disproportionate impact when access to treatment is compromised. IPOPI has initiated a crisis management action plan aimed at securing as much support as feasible, identifying evolving needs and continuously assessing how to best tackle the distress we observe. Indeed, patients, as well as parents and caregivers, are in a horrendous situation, looking for treatment, notably immunoglobulins. In order to maximize efficiency and avoid doubling-up on tasks, we are coordinating efforts with our membership and keeping in close contact with our stakeholders in and around the Ukraine. More specifically we have been in contact with physicians, our NMOs, and plasma facilities – including those in Ukraine.

ESID, IPOPI together with INGID and J Project stakeholders, have also released a Statement of Solidarity and support to those affected by the war in Ukraine. The statement specifically calls for such patients to be able to access their life saving treatment. Health is a human right, ensuring access to healthcare is our mission and we believe that solidarity will defeat violence.

Access to medicine and treatment is a first priority, following this we are focusing efforts towards coordinating accommodation, transport and other needs. To ensure most effective practice, we are working on a case-by-case basis. Martine Pergent, IPOPI president, declares “I am humbled by the dedication shown by our national members and by the medical teams who all do their very best to welcome the refugees. Thanks to this, we altogether have so far been able to provide support to patients and their families in Romania, Poland, France, Sweden, Norway, Spain, Germany, Italy, Belgium, as well as other nations. I am sure that other countries take also their part of this great move, don’t hesitate to share with us!”.

IPOPI would like to salute the dedication and hard work of our membership, including those far beyond Europe, who are currently mobilising to help people with PID affected by this war. We have been moved and inspired by the PID stakeholders community’s solidarity. We encourage NMOs in the EU as well as others to reach out to us for support as needs are growing.