ይህ ድር ጣቢያ ኩኪዎችን ይጠቀማል በዚህም እጅግ የላቀ ተጠቃሚ ተሞክሮ ልንሰጥዎት እንችላለን. የኩኪ መረጃ በአሳሽዎ ውስጥ ይቀመጣል እና ወደ ድር ጣቢያችን ሲመለሱ እርስዎን መለየት እና ቡድናችን የትኛው የትኛው ክፍል በጣም ጠቃሚ እና ጠቃሚ ሆኖ እንደሚያገኙ እንዲረዱ ያግዛቸዋል.
ለኢቢ ልዩነት ይሁኑ
2023 was a pivotal year for the epidermolysis bullosa (EB) community. The ‘A Life Free of Pain’ appeal, which so many of you kindly supported and which included DEBRA Vice President, Graeme Souness, swimming the English Channel, brought EB to the public’s attention, and delivered much-needed funding that enabled the first EB drug repurposing clinical trial to be commissioned.
There is still much to do, though…
EB ብርቅዬ የሆነ የዘረመል የቆዳ በሽታ ሲሆን ይህም ቆዳ በትንሹ ንክኪ እንዲፈነዳ እና እንዲቀደድ የሚያደርግ ሲሆን ይህም በሚያስደንቅ ሁኔታ የሚያሰቃዩ ፊኛዎች፣ ክፍት ቁስሎች እና ከባድ ማሳከክ ያስከትላል። EB ያለባቸው ሰዎች በቋሚ እና በሚያዳክም ህመም ውስጥ ይኖራሉ እና ዛሬ የእርስዎን ድጋፍ ይፈልጋሉ።
ከኢቢ ጋር ለሚኖሩ ሰዎች ልዩነት መሆን ትችላለህ
The objective of the ‘BE the difference for EB’ appeal is to raise £5m. With this funding we will:
- ለኢቢ ማህበረሰብ ልዩ የአእምሮ ጤና ምክር እና ግብአቶችን ያቅርቡ።
- ለኢቢ ማህበረሰብ ተጨማሪ የገንዘብ ድጋፎችን መስጠት፣የኢቢ ምልክቶችን ለማስታገስ ለስፔሻሊስት ምርቶች የገንዘብ ድጋፍ እና የገንዘብ ድጋፍ እና/ወይም የገንዘብ ድጋፍ መለጠፍን ጨምሮ እያንዳንዱ አባል ወሳኝ የኢቢ የጤና አጠባበቅ ቀጠሮዎችን መከታተል ይችላል።
- offer nationwide access to the DEBRA UK community support team, including a programme of regional EB Connect events.
- accelerate our drug repurposing programme as we seek to secure effective drug treatments for every type of EB.
With your support, we will continue to invest in the drug repurposing clinical trials that are so important to ensure that in the future there is an effective drug treatment for every type of EB.
Your support will also enable us to provide an enhanced programme of EB community care and support that is vital to improve quality of life for people living with EB today.
Please donate today. Every action takes us one step closer to a world where no one suffers with the pain of EB.