DAILY RARE DISEASE BRIEF
연합회 활동, 희귀질환 정책, 치료제 접근성과 PKU 관련 소식을 매일 자동 수집하고 관련도에 따라 분류합니다.
기사 원문을 복제하지 않고 출처가 제공한 제목·요약과 원문 링크만 표시합니다. 자동 분류 결과는 의료·법률적 판단을 대신하지 않습니다.
<a href="https://news.google.com/rss/articles/CBMid0FVX3lxTE1ncWNVQU9EbjFCOXNfRzR3UElrQThIeVJGcUtWQWd4cEdVNEM0NGZQUTktOGZtR29VU2poUWZmNFduaHQ4Yjh4R0ZOZVZYeHBXMmlSTjU3ZzNhcHVzR2RrMWJuRDBhV1J5bjRtOFJpZi1MQllZYjlV?oc=5" target="_blank">녹십자, 알보젠 PKU치료제 ‘디테린정’ 5년간 국내 유통</a>  
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMilwFBVV95cUxQZWhOVnNQcmJtVmx5Z2ZLYU85RXg4UTFoX0tCbm43VnhjLVhZcy1Sc3AydEo0ZEJJOXlSdmxlcDdlazVSa0R5WXZadzhMYVpZakRVNVJYdFJkRjV3RWR5d2xFeEJwb1BNQUhmdFFqa0FYdFIxYXpQV2x0RXl4TEtMU2R0V3VkVEgwUndDWmlTN1JCbV9PeEFJ0gGrAUFVX3lxTE9kV0tWUWxPM2
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiVEFVX3lxTFBOaFRDcVppVDRkcDZBRVhId1VTMkhxMmJ6V2IzbUJjSXN4TG9vd0JCTVJ4bHRMUUc4N1B4VnV2djFtay1Na1kyQ0VINFpUYmktb1c2bw?oc=5" target="_blank">심평원, 희귀질환 치료제 신속등재 지원…제약사 품목별 맞춤 상담</a> <font color="#6f6f6f">MEDI:GATE NEWS</font
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMib0FVX3lxTFBYcUdaMi1kU2tld1VpWkg4THRMVVowVkJOb3doS2lBX0Fxb3phTy0taHZJM2R6UmxuUFpLNS00REcwMW1tT0FhZWV5YVM5RENfX2Z1aUFNdEMxUHJjSDlMb1NZQmFxUkY0ZXZHMEtkdw?oc=5" target="_blank">심평원, 24일 희귀질환 치료제 신속등재 시범사업 상담회 개최</a> <font c
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMia0FVX3lxTFBDclpfbDdOcjdtdGw2Sy1QSy1wQy1RelRpV3RhUDNmYkxzdlRYNFdWbXJRSVBaVkttYzRLQUZyOWdnZXBGYUhOQ1pQQkdhUmhSTE9BQUdOMG8zZXZJNzNvV1FONXhHN3p5QzQw?oc=5" target="_blank">희귀질환 치료제 신속등재 고민인 제약사 위해 상담회 진행</a> <font color="#6f
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiVEFVX3lxTE5BeDItc0xmT1Q1WnFqMGxwWG5Ra252bkh3cF9sRlZBakRBMW95OW9nNE5idWwyeVBFVnFjYlh4MVhMRFFKek1TdjA4WFpMTDB0dlVERQ?oc=5" target="_blank">심평원, 희귀질환 치료제 신속등재 시범사업 상담회 개최</a> <font color="#6f6f6f">MEDI:GATE NEWS</font>
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMib0FVX3lxTE42b1hTX2Jpa0hsMVFEV1lrMFZRZkpKNmtFbHFBcWJGVGNQY1gyb2UtcllxSjBDaEE3dS1qZWFEaHNXREVBa0xTVXBDSjdkSFhlZEhWZzJ1dUowcUtxQUo3U3VZWUN6d3luaUZ5dGUyaw?oc=5" target="_blank">희귀질환 치료제 신속등재 시동…환자 체감 과제는?</a> <font color="#
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMia0FVX3lxTE1qYmJLS211Q1hzZGw3X0tNcnJrNlV4bFUzN2pUUTM2LWhLVGtRUm9NS0pOaUFUakRDWFFzRUNHVm95b1FrZ0V3X3RGY280dE9sOXEzRXk0bmxXdldvOVlIYlhyeTY3OTlfeG9r?oc=5" target="_blank">GIFT 신속허가 다음은 급여…희귀질환 신속등재 연계 과제</a> <font color="#6
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMib0FVX3lxTFAxeTVjYjctTDFxS3F3SDZ5SlJIYzVDM2hTcTctSXVZaHc0SnVvQ2xJYmpZWEFzSjh5NXZVQzlMODhvbUZLTmhkYVlYdXVRSHBKNWNBX2NyYndZaHJTUE1RZDJDMlRtQy1yUXJnMW9tcw?oc=5" target="_blank">환자단체, 희귀질환 의료비 지원 ‘4대 질환 특례’ 차별 폐지 촉구</a> <fon
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiVEFVX3lxTE44aFhjTDhmTjRFVldqTG5zcnVqRVV6SzJvYVc2VUFuUjliNEtZcEhZTEJXSUQ4RldfYnd4VEZxcjdjSm4tV1gzdzZtYmphYVR6Q3RrNA?oc=5" target="_blank">한국희귀·난치성질환연합회, 희귀질환 의료비 지원 기준 개선 요구</a> <font color="#6f6f6f">MEDI:GATE NEWS</font
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMia0FVX3lxTE45VmcxODQxd3YxYVJvWl9BT3FCLUV3VjlOLWdYdkg3MjBKR2Z0ekpzVGNyNW5yYWU0TVhiVk9sdFVRaDFPZVAxdmYtd3lZb2RFbnNEYTJxd1NlS0RTWmtOWnRDWTR1b2Q4WnRJ?oc=5" target="_blank">복지부, 하반기 희귀질환 신속등재·제네릭 약가 인하 역점</a> <font color="#6f
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMia0FVX3lxTE12V0Q4YXlTMkc5eGVtMERJNXdFVi0zQ1NQRW5IdjhUQ0pVaUQxdUJYYjF2aUUyOFVycU5TbnI0ZXN5STlPeV9Bcnp3REo1TFpocmpEMzZxZEVHcm91c2lsREdXRzYzMXJWZE9j?oc=5" target="_blank">희귀질환 신속등재 '100일의 유혹'… 급여확대와 총액 고민</a> <font color="#
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMibEFVX3lxTE8td0J4djB3dmM4Rm9NeXQ2Y3VTV3JZdWZkU0xvWmhwWjdSYWtaR2hlOGw5c2dYc2RlUDNwWmkzYU12UERsdXN3QTlzemNBUG5wWllNTWdNajFnNGVlMXJpdWxTc1U2dkRtTDUzZg?oc=5" target="_blank">희귀질환 신속등재 '사후평가' 건정심 도마 위…복지부 보완 약속</a> <font colo
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원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiakFVX3lxTE5aYlRmY01xN25ySVA1dElQSFo4UDdGZVl3Q3U1SDNFVlJBeWlHZTNCaEtobGF1VjZVdmtyVHRKWUEtYXN2T2NSWXNUeUctMlM0QWVKTWUzdzE2U3ZNSE1fWl9IMjhkYjNRU1E?oc=5" target="_blank">[희귀질환을 새기다] “희귀난치질환 1000개가 넘는데, 사회적 관심 부족”</a> <font
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiWEFVX3lxTE9uMWptdDAxZ3g1TFlKSVV6N1FjZnRVZ0gtWWNVT0loWkhLTGgybDVPRjFKeHRHUEtsb3dCd1doeHhreFBlMU1SV2VrOW5CSGNjNEtSek9rcTc?oc=5" target="_blank">美 바이오마린 페닐케톤뇨증 치료제 ‘팰린직’ 12~17세 적응증 확대 FDA 승인</a> <font color="#6f6f6f">헬스오</
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMibEFVX3lxTE5kWEhuLXVVRDY3cWZMWVRmWXBIWEV5UVFLN2dhNkRIV3ZVN0xVQ2RfMW82U2JyQ3NHYUJMcHpUaXRIaUx1WGtCZnNpSGZILVA1bEZhS2ozMmhQYzNBekM3OEF5eUpVSHJDSVBtaA?oc=5" target="_blank">PTC ‘세피언스’, 일본서 전 연령 승인… PKU 치료 패러다임 바꾼다</a> <font
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiakFVX3lxTE9ITjY3NG5JWTc5cGZxc3ZJaEVTb3VxSnMySUNQRElJSFM1ZC1mSjI2eWE2ZWt1aHNHYzBBYUhEcjN3ajRNWWpJYVdMWmVuZ3dxQnNTQ1A5SlB2NkZzLVEwcG5BMWh1SmxrOUE?oc=5" target="_blank">오츠카 PKU 치료물질 'JNT-517' 글로벌 3상 임상 착수</a> <font color="
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiWEFVX3lxTE5hb0MyLWFkOEEteTlzd3Z5dHZlMlROOTJLcko2bWRhSDV1QjZ5bXhLUmw3T0dWM0NiRmRnelc3eFZPWTJfb01UVXRQd0hnZ19zSVUwc0VtSHk?oc=5" target="_blank">美 바이오마린 페닐케톤뇨증 치료제 ‘팰린직’ 12~17세 적응증 추가 FDA ‘우선심사’ 지정</a> <font color="#6f6f6f
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiV0FVX3lxTE5NY2FRTDRJc3d1YU82Vkt6N0tfcUc4VkgwdjF4S3ZiWHdhdWJPVHc3YnV1UjRlOHpjWWpnYkNhR3dyU1RfMDVlTVFOb2VpLUx3TjBvTFR6MA?oc=5" target="_blank">메이즈, ‘SLC6A19 저해제’ PKU 1상 "긍정적"..주가 급등</a> <font color="#6f6f6f">바이오스펙테이터</fon
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMib0FVX3lxTE5EY3pyM21LTjhFMS1kNGlzYzU0Ylk3LXFfS2RoaW8tWEhvM0JIcG95azVTelpYdkhKVksyZnNHZHZ2WkdrMTV6bkRpTVBZazk0eXBPemRUVUdTYVNLTWNETmtvX3NpWG9ZblZpVjY2UQ?oc=5" target="_blank">aPKU 치료제 ‘옥시트립탄’ 긴급도입 승인…4년 만에 재공급 길 열려</a> <f
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMib0FVX3lxTE9XOWYycll1WFNMUGdfM21uQXJPeVd4dk5YRWVieFBTcnFTN2FBRXYzSkxZU2huNE1IQUtmRzR4b3hma2ZJdW5uYUtjZTduenhxVTBWNEYtZUlpZVIyUnVxV3NfeW9hV0UyUFNwYUx3MA?oc=5" target="_blank">“끊겼던 생명줄 다시 이어져”… aPKU 치료제 5-HTP 긴급도입</a> <fon
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMixAFBVV95cUxOWUZBbURJdU5EcTRiY0g4ZVVNYnItYzkwX1VpcmtHUDQ0ZVdBcUJmWWlEazJwdWhISGh2b3R6S2RFZzZpa1RIWDlZS3d6WS12SnFNT3k4cS1QT1F4d0VzOURkd2t5dEhYT0lVbkI0bnVXcGktRXpBQU5GWU9HTUVNS1h5bHJ6eG5SbTU1YXNoWXdzN0x2Z09BT29pQkhMVFpFMkg5eTQ2LWdZd1
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원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiakFVX3lxTE5HYm1kWHZpUm9EN09UeVQ4MUxrUnFTelJ3RVpkek9NVmd0d3VnYm51Qjh3WXJoYXFRS2xOamdtZGdRZ2wybU04VGVZazliSHg5VlZGWXlTZWcyX3EwRnAzT2FFclNFVUtZeEE?oc=5" target="_blank">미 PKU 치료제 승인</a> <font color="#6f6f6f">의학신문</font>
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMibkFVX3lxTE84bXg2dkFBb0lvR19YZUl3Y0JKOUZlRUR4cjBVS1UzUXhQaGRYdS0yUENzYi1wRF9IaU5OX3lxODhJaEdTMS1uTlFXT1ZSTjRVWnlrRkRSUHdsWHItSHBtMy1vNzZlN2pOU0FzZllR?oc=5" target="_blank">[기부행사] 햇반 저단백밥, PKU, 사회적 책임</a> <font color="#6f
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMibEFVX3lxTE92VFplMWRoZE9ScTg1WncxbWotWTNNeFlHandQZGF2V1RfNEU4bElpQnRHZ2FnVVlxRFdqUU16Q1FNdTM3RVh1MjBzb1RnSng4azM3a3VjbXhuV0ZqRGtDOXFUZWFYY2k5Tk9xTA?oc=5" target="_blank">매일유업, ‘PKU 가족성장캠프’ 23년째 후원…"희귀질환 환아 위한 식이관리·정서적 유대의 장 마련"</a>
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원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMiVEFVX3lxTE82azJrLWt2OXIzT1BsTkY3dFRpZE9qSkRnM1VQVkp1aUdXdF9PVGVEZ0pFdl9pdEUtRTlTOExqd1pLN0NVNmMzeDE3TUhMbVEtckEyOA?oc=5" target="_blank">매일유업, 선천성대사이상 환아 위한 'PKU 가족성장캠프' 23년째 후원</a> <font color="#6f6f6f">더밸류뉴스</font>
원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMidkFVX3lxTE1wWnBRN1RocUZoQWtnaWNzOGx2S1VtRmlfRGE4blNMQ3M5b1ljSTVhVkh1MFp1ZFc0eW5wX0trZTRfR1hPS29MYU5zVDhRN1RJb1I1QVMzeDZfQWJpNklVemdXZXA0NGU0VFNUVlo2RzBtWG5BYXfSAXpBVV95cUxPZ3lQdmtXWmRqR3dNT2tXNWtfVGxISWxlbzIxRk5DMW1TVEx2eFkxSHJTQk
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원문 확인 ↗<a href="https://news.google.com/rss/articles/CBMif0FVX3lxTFBkcXRoQk92dExpY0k3OGNMc2xCOUNqazhWa1RlcXVXanNoZHFKWEpSUDhFVTF6VXZtUlI1RkVUUTd5NVRhUmo5ZGJtaTh1QU0xMGJPQWFPZ25QdVQ5QUdOMFRSRDdiVzRJLUdRbzJXbUdrS3JXNDl3aWxSX1ZrcDg?oc=5" target="_blank">페닐케톤뇨증 신약 ‘세피언스’, 국내 희귀의약품 지정</a>&nb
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