Debra's Head of Research @sineadhickey.bsky.social and Registry Coordinator Ms Lara Cutlar from NISR solutions at the
@rarediseasectn.bsky.social Conference. They presented on the #EBregistry. A resource for driving progress in #EBcare and #EBresearch.

@hrbireland.bsky.social @hrci.bsky.social

If you or a loved one lives with #epidermolysisbullosa in Ireland, joining the #EBRegistry is a powerful way to support #EBresearch and advance #EBcare.

Learn more👉 www.debra.ie/eb-research/...

#HealthReserchMatters #EB #Registries

We're proud to support not just #EBresearch but also Clinical Practice Guidelines (CPGs) to improve #EBcare.

The latest CPG focuses on managing oesophageal strictures in inherited #EB and is now available to help clinicians worldwide improve care.

👉 www.debra.ie/news/new-cli...

We're so glad you shared this brilliant work at the #RareResearch25 Conference! A great example of progress and hope for #EBcare and #EBresearch in #RareSkin disease. Thank you for joining us and for everything you contribute to advancing rare disease research!

DOI: 10.1126/science.adn6471
カリフォルニア工科大学でフェイスマスクのウェアラブルデバイスを開発
呼気凝縮液(EBC)に含まれる分子情報をモニタリングするEBCareを使用して、喘息またはCOPDの患者を対象にバイオマーカーである亜硝酸塩について呼気をモニターし、正確に検出することを示した
また、血中アルコール濃度の検出も正確であることも実証できている
スマートマスクは比較的低コストで材料費はわずか 1 ドル程度になるように設計されており、将来的に幅広い化合物に対応するセンサーも期待される
www.eurekalert.org/news-release...

EBCare, can analyze the chemicals in one's breath in real time. ("EBC" is an acronym used in this field that means "exhaled breath condensate.") For example, the mask could monitor asthma patients for levels of nitrite, a chemical that indicates airway inflammation.

😷 A EBCare, uma máscara inteligente, promete revolucionar o tratamento de doenças respiratórias. Com sensores avançados, ela detecta sintomas e fornece dados para tratamentos personalizados, abrindo caminho para uma medicina mais precisa.