How are we helping families affected by this conflict
“The CDKL5 Alliance along with other Rare Disease Patient Advocacy Groups across Europe, and the rest of world have been supporting families in our communities that have been impacted by the current conflict in Ukraine. The CDKL5 Alliance, as an organisation, condemn any conflict, as this affects all lives of all. In this case, it has not just been the families in Ukraine, but those families in Russia who have also been impacted by sanctions with reduced access to vital medication, and those living in Ukraine living in unsafe conditions. Within our own CDKL5 community, we have supported and supplied those with CDKL5 necessary medications to reduce the medical impact due to the current situation in Ukraine and Russia.
Where we can help, we will, so please feel free to reach out if you are in need of support.”
We would like to share also that the VASCERN Patient Group (ePAG) has also set up a collaboration with all ERNs to help Rare Disease Refugees. They have created a website for this, please there website see HERE. It has a database of medical and specific contact for several countries in the EU.
If you (your Patient Organisations) have developed or are planning to carry out any actions (e.g. sending medication), please reach out and liaise with our task force (firstname.lastname@example.org). They will do their best to disseminate it, help, and align your efforts!