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https://www.rareadvocates.org/news/everylife-foundation-submits-letter-to-congress-advocating-for-rare-disease-center-of-excellence/ 2026-06-08T15:53:55+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-for-rare-diseases-is-excited-to-announce-its-scientific-workshop-slated-for-may-21-2024-in-washington-d-c-with-both-virtual-and-in-person-attendance-options/ 2026-06-08T15:55:21+00:00 https://www.rareadvocates.org/news/the-everylife-expresses-concern-with-the-potential-unintended-consequences-of-many-of-the-recommendations-within-the-proposed-changes-to-the-nomination-process/ 2026-08-26T18:13:53+00:00 https://www.rareadvocates.org/news/safe-step-act-will-ensure-employer-health-plans-offer-a-medically-reasonable-and-expedient-step-therapy-exceptions-process/ 2026-06-08T16:25:41+00:00 https://www.rareadvocates.org/news/everylife-foundation-for-rare-diseases-welcomes-michael-pearlmutter-as-ceo-2/ 2026-08-04T20:51:52+00:00 https://www.rareadvocates.org/news/everylife-foundation-applauds-the-introduction-of-the-creating-hope-reauthorization-act-of-2024-urges-congress-to-act-swiftly/ 2026-06-05T15:48:15+00:00 https://www.rareadvocates.org/news/prv/ 2026-06-05T15:49:26+00:00 https://www.rareadvocates.org/news/valuing-rare-disease-treatments-in-healthcare-real-experience-real-impact/ 2026-06-08T16:30:43+00:00 https://www.rareadvocates.org/news/innovative-collaboration-aims-to-improve-care-for-millions-affected-by-rare-diseases/ 2026-06-08T16:56:46+00:00 https://www.rareadvocates.org/news/wisconsin-introduces-legislation-to-align-newborn-screening-with-federal-recommendations/ 2024-02-02T15:36:27+00:00 https://www.rareadvocates.org/news/everylife-foundation-submitted-comments-to-fda-on-the-draft-guidance-document/ 2026-06-18T01:57:33+00:00 https://www.rareadvocates.org/news/everylife-foundation-for-rare-diseases-lauds-winners-of-2023-rarevoice-awards/ 2026-06-08T17:06:07+00:00 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https://www.rareadvocates.org/news/everylife-submitted-comments-to-inform-the-fda-on-the-patient-focused-drug-development-guidance/ 2026-06-08T17:12:27+00:00 https://www.rareadvocates.org/news/texas-passes-life-saving-newborn-screening-legislation/ 2023-06-13T17:03:48+00:00 https://www.rareadvocates.org/news/rareis-scholarship-awards-1320000-to-87-rare-disease-recipients-in-2023/ 2026-06-08T15:19:24+00:00 https://www.rareadvocates.org/news/texas-senate-passes-landmark-bill-paving-the-way-for-enhanced-newborn-screening/ 2023-06-01T18:15:37+00:00 https://www.rareadvocates.org/news/dr-emil-kakkis-retires-from-everylife-foundation-board-of-directors/ 2023-05-18T13:05:07+00:00 https://www.rareadvocates.org/news/everylife-foundation-applauds-bipartisan-congressional-letter-urging-fda-to-strengthen-rare-disease-activities/ 2026-06-08T17:13:51+00:00 https://www.rareadvocates.org/news/texas-newborn-screening-bill-passes-in-the-house-and-moves-to-the-senate/ 2023-05-08T19:07:30+00:00 https://www.rareadvocates.org/news/medicaid-unwinding/ 2026-06-08T17:14:11+00:00 https://www.rareadvocates.org/news/everylife-submitted-comments-to-cms-on-medicare-drug-price-negotiation-program/ 2026-06-08T17:16:02+00:00 https://www.rareadvocates.org/news/gene-targeted-therapies-early-diagnosis-and-equitable-delivery/ 2026-06-08T17:21:39+00:00 https://www.rareadvocates.org/news/texas-introduces-rusp-alignment-legislation/ 2023-03-08T16:16:14+00:00 https://www.rareadvocates.org/news/qa-with-sarita-edwards-and-abbey-hauser/ 2026-06-08T17:24:31+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-submits-comments-to-advisory-committee-for-heritable-disorders-in-newborns-and-children-following-february-meeting/ 2023-02-14T08:00:18+00:00 https://www.rareadvocates.org/news/everylife-submitted-comments-to-cms-about-their-proposed-changes-to-the-health-equity-and-utlization-management-components-of-the-proposed-rule-on-medicare-advantage-and-the-medicare-prescription-dr-2/ 2026-06-08T17:26:30+00:00 https://www.rareadvocates.org/news/everylife-foundation-and-ivi-announce-rare-disease-initiative/ 2026-06-08T17:27:39+00:00 https://www.rareadvocates.org/news/rare-diseases-europe-partners-with-everylife-foundation-to-support-brussels-rare-disease-week-2023/ 2023-01-23T15:39:10+00:00 https://www.rareadvocates.org/news/expert-evaluation-of-strategies-to-modernize-newborn-screening-in-the-united-states/ 2026-08-17T19:03:46+00:00 https://www.rareadvocates.org/news/breaking-news-on-passage-of-fy23-omnibus/ 2026-06-18T01:57:16+00:00 https://www.rareadvocates.org/news/three-rare-disease-patient-advocates-lend-new-perspectives-experience-to-everylife-foundation-board-of-directors/ 2022-12-14T18:24:07+00:00 https://www.rareadvocates.org/news/congresswoman-matsui-named-rare-disease-congressional-caucus-co-chair/ 2026-06-08T17:31:24+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-submits-end-of-year-letter-to-congressional-leadership/ 2026-06-08T17:32:52+00:00 https://www.rareadvocates.org/news/the-rare-disease-diversity-coalition-rddc-appropriations-act-and-end-of-year-priorities/ 2026-06-08T17:34:59+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-provides-testimony-on-newborn-screening-efforts-to-the-achdnc/ 2022-11-03T18:54:37+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-provides-testimony-on-newborn-screening-efforts-to-the-advisory-committee-for-heritable-disorders-in-newborns-and-children/ 2022-11-03T07:00:49+00:00 https://www.rareadvocates.org/news/rare-disease-community-wins-in-pdufa-vii/ 2026-06-18T01:56:55+00:00 https://www.rareadvocates.org/news/rare-disease-community-wins-victory-over-oregons-harmful-accelerated-approval-proposal/ 2026-06-08T17:37:46+00:00 https://www.rareadvocates.org/news/48844-2/ 2026-06-18T01:56:41+00:00 https://www.rareadvocates.org/news/rare-disease-week-on-capitol-hill-2021-diversity-roundtable-discussions/ 2026-06-15T19:17:25+00:00 https://www.rareadvocates.org/news/everylife-foundation-signs-support-letter-for-fy23-appropriations/ 2026-06-08T17:40:34+00:00 https://www.rareadvocates.org/news/the-everylifes-director-of-policy-shared-the-foundations-newborn-screening-efforts-to-the-achdnc/ 2022-08-30T19:41:22+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-partners-up-with-expecting-health-for-the-4-th-annual-newborn-screening-bootcamp/ 2026-06-08T17:49:02+00:00 https://www.rareadvocates.org/news/everylife-foundation-shares-important-updates-on-congressional-developments/ 2026-06-09T03:00:12+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-responds-to-comments-on-proposed-rules-fda-and-cms/ 2026-06-09T03:02:16+00:00 https://www.rareadvocates.org/news/everylife-foundation-comments-to-cms-annual-update-of-the-inpatient-payment-prospective-system-ipps-that-sets-payment-policies-for-inpatient-hospital-based-care/ 2026-06-09T03:04:19+00:00 https://www.rareadvocates.org/news/everylife-optimistic-for-rare-disease-priorities-ahead-of-senate-pdufa-hearing/ 2026-06-18T01:56:22+00:00 https://www.rareadvocates.org/news/everylife-foundation-comments-to-food-and-drug-administration-fda-on-setting-recommendations-for-diversity-plans-that-aim-to-increase-clinical-trial-diversity/ 2026-06-09T03:12:18+00:00 https://www.rareadvocates.org/news/maryland-passes-life-saving-newborn-screening-legislation/ 2022-05-12T21:36:15+00:00 https://www.rareadvocates.org/news/everylife-provides-testimony-at-federal-advisory-committee-for-heritable-disorders-in-newborns-and-children-3/ 2022-05-12T14:30:45+00:00 https://www.rareadvocates.org/news/everylife-foundation-submits-comments-to-cms-on-oregon-1115-waiver-application/ 2026-06-09T03:14:48+00:00 https://www.rareadvocates.org/news/iowa-passes-life-saving-newborn-screening-legislation-2/ 2022-04-22T14:23:51+00:00 https://www.rareadvocates.org/news/everylife-celebrates-rare-disease-story-contest-awardees/ 2026-06-09T03:16:57+00:00 https://www.rareadvocates.org/news/maryland-passes-lifesaving-newborn-screening-legislation/ 2022-04-12T22:57:32+00:00 https://www.rareadvocates.org/news/everylife-foundation-comments-to-cms-on-a-proposal-contained-within-oregons-1115-waiver-application/ 2026-06-09T03:17:42+00:00 https://www.rareadvocates.org/news/rare-disease-community-priorities-included-in-todays-help-committee-hearing/ 2026-06-09T03:19:05+00:00 https://www.rareadvocates.org/news/the-national-economic-burden-of-rare-disease-in-the-united-states-in-2019/ 2026-06-09T03:21:44+00:00 https://www.rareadvocates.org/news/patient-centered-core-impact-sets-what-they-are-and-why-we-need-them/ 2026-06-09T03:23:43+00:00 https://www.rareadvocates.org/news/everylife-foundation-signs-statement-lauding-establishment-of-federal-agency-established-to-accelerate-biomed-research-and-drug-development/ 2026-06-09T03:25:34+00:00 https://www.rareadvocates.org/news/more-than-650-rare-disease-advocates-met-with-their-federal-legislators-during-rare-disease-week-on-capitol-hilll-2022/ 2026-06-09T03:27:22+00:00 https://www.rareadvocates.org/news/critical-window-for-stat-act/ 2026-06-09T03:29:26+00:00 https://www.rareadvocates.org/news/everylife-foundation-invites-adults-with-rare-disease-to-apply-for-rareis-scholarship-2/ 2025-10-28T21:38:13+00:00 https://www.rareadvocates.org/news/everylife-issues-statement-on-house-energy-commerce-hearing/ 2026-06-09T03:33:10+00:00 https://www.rareadvocates.org/news/mississippi-becomes-first-state-in-2022-to-sign-newborn-screening-legislation/ 2022-03-16T18:57:51+00:00 https://www.rareadvocates.org/news/everylife-issues-statement-on-rare-disease-communitys-drug-pricing-considerations/ 2026-06-09T03:35:49+00:00 https://www.rareadvocates.org/news/everylife-issues-statement-on-rare-disease-communitys-drug-pricing-considerations-2/ 2026-06-09T03:36:29+00:00 https://www.rareadvocates.org/news/stat-act-included-in-energy-commerce-committee-hearing/ 2026-06-09T03:37:22+00:00 https://www.rareadvocates.org/news/iowa-passes-life-saving-newborn-screening-legislation/ 2022-03-10T22:17:21+00:00 https://www.rareadvocates.org/news/mississippi-passes-life-saving-newborn-screening-legislation/ 2022-03-09T21:05:05+00:00 https://www.rareadvocates.org/news/everylife-foundation-continues-to-diversify-board-with-young-adult-abbey-hauser/ 2026-06-09T03:39:24+00:00 https://www.rareadvocates.org/news/rdla-announces-advanced-advocacy-training-program/ 2022-02-23T18:22:34+00:00 https://www.rareadvocates.org/news/everylife-joins-rare-disease-leaders-in-call-to-strengthen-and-protect-accelerated-approval-pathway/ 2026-06-09T03:39:51+00:00 https://www.rareadvocates.org/news/everylife-congratulates-dr-robert-califf-on-his-confirmation-as-fda-commissioner/ 2022-02-15T23:00:13+00:00 https://www.rareadvocates.org/news/iowa-introduces-rusp-alignment-legislation/ 2022-02-11T04:19:53+00:00 https://www.rareadvocates.org/news/patient-advocacy-group-comments-to-cms-in-response-to-proposed-decision-memo-monoclonal-antibodies-directed-against-amyloid-for-the-treatment-of-alzheimers-disease/ 2026-06-05T14:37:48+00:00 https://www.rareadvocates.org/news/everylife-offers-solutions-as-economic-impact-data-grows/ 2026-06-15T19:25:07+00:00 https://www.rareadvocates.org/news/the-economic-burden-of-rare-diseases-quantifying-the-sizeable-collective-burden-and-offering-solutions/ 2026-06-15T19:26:36+00:00 https://www.rareadvocates.org/news/everylife-introduces-patient-involvement-guide/ 2026-06-15T19:27:27+00:00 https://www.rareadvocates.org/news/guide-to-patient-involvement-in-rare-disease-therapy-development/ 2026-06-15T19:28:20+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-provides-784000-in-direct-community-support/ 2026-06-15T19:29:58+00:00 https://www.rareadvocates.org/news/mississippi-introduces-rusp-alignment-legislation/ 2022-01-23T19:31:30+00:00 https://www.rareadvocates.org/news/common-challenges-and-identified-solutions-for-state-newborn-screening-programs-during-covid-19-pandemic/ 2022-01-18T08:00:38+00:00 https://www.rareadvocates.org/news/maryland-becomes-first-state-in-2022-to-introduce-rusp-alignment-legislation/ 2022-01-14T14:45:58+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-submits-comments-to-the-oregon-health-authority-2/ 2026-06-15T19:46:05+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-submits-comments-to-the-oregon-health-authority/ 2026-06-15T19:47:34+00:00 https://www.rareadvocates.org/news/publication-finds-that-modernization-of-u-s-newborn-screening-system-is-necessary-calls-for-change/ 2022-01-05T14:00:48+00:00 https://www.rareadvocates.org/news/expert-evaluation-of-strategies-to-modernize-newborn-screening-in-the-united-states-2/ 2026-08-05T18:46:16+00:00 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2026-06-15T20:11:51+00:00 https://www.rareadvocates.org/news/statement-of-support-for-the-precision-medicine-answers-for-kids-today-act-2/ 2026-06-15T20:14:06+00:00 https://www.rareadvocates.org/news/rare-disease-drug-development-clinical-scientific-patient-caregiver-perspectives-book/ 2021-11-09T08:01:16+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-provides-testimony-at-the-federal-advisory-committee-for-heritable-disorders-in-newborns-and-children/ 2021-11-09T08:00:33+00:00 https://www.rareadvocates.org/news/takeda-releases-new-report-reducing-time-to-diagnosis-for-people-living-with-rare-diseases-a-conversation-on-u-s-policy-opportunities/ 2026-06-15T20:17:56+00:00 https://www.rareadvocates.org/news/everylife-supports-rep-eshoos-arpa-h-bill/ 2026-06-15T20:23:31+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-joins-13-health-experts-and-organizations-in-sending-a-letter-in-support-of-u-s-rep-anna-g-eshoos-legislation-to-create-an-independent-advanced-research-projects-a/ 2026-06-05T14:49:00+00:00 https://www.rareadvocates.org/news/ncats-releases-economic-burden-of-disease-study/ 2026-06-15T20:25:28+00:00 https://www.rareadvocates.org/news/fdas-accelerated-approval-pathway-separating-fact-from-fiction/ 2026-06-05T14:30:10+00:00 https://www.rareadvocates.org/news/gao-releases-study-on-the-cost-of-undiagnosed-and-untreated-rare-diseases/ 2026-06-15T20:33:08+00:00 https://www.rareadvocates.org/news/rare-disease-legislative-advocates-rdla-opens-registration-and-announces-finalists-for-the-2021-rarevoice-awards/ 2025-10-28T21:38:08+00:00 https://www.rareadvocates.org/news/every-life-testifies-at-pudfa-vii-meeting/ 2026-06-15T20:34:52+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-provides-testimony-at-pdufa-vii-meeting/ 2026-06-16T14:26:22+00:00 https://www.rareadvocates.org/news/the-everylife-releases-statement-on-the-recent-orphan-drug-tax-credit-odtc-changes/ 2026-06-16T14:28:12+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-releases-statement-on-the-recent-orphan-drug-tax-credit-odtc-changes/ 2026-06-16T14:29:24+00:00 https://www.rareadvocates.org/news/advocates-secure-new-cosponsors-caucus-members-2/ 2026-06-16T14:34:01+00:00 https://www.rareadvocates.org/news/everylife-relaunches-newborn-screening-action-center/ 2025-10-28T21:38:07+00:00 https://www.rareadvocates.org/news/everylife-provides-testimony-at-federal-advisory-committee-for-heritable-disorders-in-newborns-and-children-2/ 2021-08-12T20:52:47+00:00 https://www.rareadvocates.org/news/everylife-provides-testimony-at-federal-advisory-committee-for-heritable-disorders-in-newborns-and-children-4/ 2021-08-12T07:00:12+00:00 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2026-06-17T17:17:35+00:00 https://www.rareadvocates.org/news/the-everylife-foundation-introduces-an-icd-code-roadmap-resource-guide/ 2026-06-17T17:18:35+00:00 https://www.rareadvocates.org/news/rare-artist-contest-now-open-for-submission/ 2025-10-28T21:38:05+00:00 https://www.rareadvocates.org/news/110-rare-disease-partners-join-stat-act-sign-on-letter/ 2026-06-17T17:22:32+00:00 https://www.rareadvocates.org/news/the-everylife-foundations-submits-sign-on-letter-with-110-rare-disease-partners-in-support-of-the-stat-act/ 2026-06-17T17:22:59+00:00 https://www.rareadvocates.org/news/everylife-urges-action-to-cdc-on-covid-19-vaccines-and-mask-guidance/ 2026-06-17T17:23:26+00:00 https://www.rareadvocates.org/news/everylife-urges-action-to-cdc-on-covid-19-vaccines-and-mask-guidance-2/ 2026-06-17T17:23:45+00:00 https://www.rareadvocates.org/news/rare-disease-community-statement-on-drug-pricing-policy-priorities/ 2026-06-17T17:24:46+00:00 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