Project Description
The National Alliance for Rare Diseases Support – Malta in collaboration with EURORDIS-Rare Diseases Europe stands in solidarity with the Ukrainian people and would like to extend support to the Ukrainian rare disease community.
During a literary evening celebrating one of the Alliance’s patient members who is Ukranian and who will be getting married in the coming week to a Maltese, Founder and President Michelle Muscat reiterated the importance of establishing global networks in medical spheres and the need to work in tandem as a global community in such times of peril.
There are an estimated 2 million people in Ukraine who live with rare diseases. As the situation escalates rapidly, we need to avoid a potential humanitarian crisis and ensure that people living with a rare disease, whose conditions are often debilitating or need frequent medical attention, are not left behind.
The impact of the invasion threatens to bring more challenges for a community already facing difficulties. As the military invasion continues to disrupt essential health services, major efforts are required to restore and strengthen health services, including access to medicines and medical equipment.
With this statement, we wish to commend the commitment and determination and express our support to the staff and volunteers of the various rare diseases associations in particular Rare Diseases Ukraine who notwithstanding the challenges facing the rare disease community in Ukraine, have not ceased for a moment their work to support and assist the rare disease patient community and mobilise policy advocacy and legislation at the national level.
The National Alliance for Rare Diseases Support – Malta joins EURORDIS in calling on the European Union, the United Nations, WHO Europe and other UN agencies, humanitarian organisations and the international community at large to protect the most vulnerable, who are caught in the conflict, unable to flee and without access to humanitarian aid. The current situation should not undermine the reality that the needs of people living with a rare disease are real, huge and unmet.
EURORDIS will facilitate a coordinated effort with European Rare Disease Federations and will support patient organisations in Ukraine as best we can to understand the challenges they are facing and to help policy makers and the international community understand the challenges people living with a rare disease face on the ground.
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The National Alliance for Rare Diseases Support – Malta b’kollaborazzjoni ma’ EURORDIS-Rare Diseases Europe tinsab f’solidarjetà mal-poplu Ukren u tixtieq testendi l-appoġġ lill-komunità tal-mard rari Ukren.
Waqt serata letterarja li tiċċelebra waħda mill-membri pazjenti ta’ RDMalta li hi mill-Ukraina u li fil-ġimgħa li ġejja se tiżżewweġ persuna Maltija, il-Fundatriċi u President Michelle Muscat tenniet l-importanza li jiġu stabbiliti networks globali fl-isferi mediċi u l-ħtieġa li naħdmu flimkien bħala komunità globali fi żminijiet diffiċli bħal dawn.
Huwa stmat li fl-Ukraina hemm 2 miljun ruħ li jgħixu b’mard rari. Hekk kif is-sitwazzjoni qed teskala malajr, jeħtieġ li nevitaw kriżi umanitarja potenzjali u niżguraw li nies li jgħixu b’mard rari, li l-kundizzjonijiet tagħhom ħafna drabi jagħmluhom fraġli jew jeħtieġu attenzjoni medika frekwenti, ma jitħallewx lura.
L-impatt tal-invażjoni jhedded li jġib aktar sfidi għal komunità li diġà qed tiffaċċja diffikultajiet.
Hekk kif l-invażjoni militari qed tkompli tfixkel is-servizzi tas-saħħa essenzjali, huma meħtieġa sforzi kbar biex jiġu restawrati u msaħħa s-servizzi tas-saħħa, inkluż l-aċċess għal mediċini u tagħmir mediku.
B’din id-dikjarazzjoni, nixtiequ nfaħħru l-impenn u d-determinazzjoni u nesprimu l-appoġġ tagħna lill-persunal u lill-voluntiera tad-diversi assoċjazzjonijiet ta’ mard rari b’mod partikolari Mard Rari Ukraina. Minkejja l-isfidi li qed tiffaċċja l-komunità tal-mard rari fl-Ukraina, ma waqfux għal mument il-ħidma tagħhom biex jappoġġjaw u jassistu lill-komunità tal-pazjenti bil-mard rari u jimmobilizzaw il-promozzjoni tal-politika u l-leġiżlazzjoni fil-livell nazzjonali.
The National Alliance for Rare Diseases Support – Malta tingħaqad ma’ EURORDIS biex tappella lill-Unjoni Ewropea, lin-Nazzjonijiet Uniti, lill-WHO Europe u aġenziji oħra tan-NU, organizzazzjonijiet umanitarji u lill-komunità internazzjonali inġenerali biex jipproteġu lil dawk l-aktar vulnerabbli, li jinqabdu fil-kunflitt, ma jistgħux jaħarbu u mingħajr aċċess għal għajnuna umanitarja. Is-sitwazzjoni attwali m’għandhiex iddgħajjef ir-realtà li l-bżonnijiet tan-nies li jgħixu b’mard rari huma reali, enormi u mhux sodisfatti.
EURORDIS se jiffaċilita sforz ikkoordinat mal-Federazzjonijiet Ewropej tal-Mard Rari u se jappoġġja lill-organizzazzjonijiet tal-pazjenti fl-Ukraina bl-aħjar mod biex nifhmu l-isfidi li qed jiffaċċjaw u biex jgħin lil dawk li jfasslu l-politika u lill-komunità internazzjonali jifhmu l-isfidi li jiffaċċjaw nies li jgħixu b’mard rari.
