<![CDATA[Shwachman-Diamond Syndrome Alliance Inc]]>https://www.sdsalliance.org/blogRSS for NodeTue, 09 Jun 2026 22:36:22 GMT<![CDATA[One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work]]>https://www.sdsalliance.org/post/sds-pfdd-voice-of-the-patient-report6a21b343513f7725cf1f510dThu, 04 Jun 2026 18:49:43 GMTEszter Hars, PhD<![CDATA[How to Fundraise for Shwachman-Diamond Syndrome Research: A Free Guide for Families and Supporters]]>https://www.sdsalliance.org/post/fundraise-for-sds-research-guide6a1a4453145da5e3830adbc3Sat, 30 May 2026 12:30:09 GMTEszter Hars, PhD<![CDATA[SDS Alliance Receives Grant from RTW Foundation to Advance Prime Editing Gene Therapy for Shwachman-Diamond Syndrome]]>https://www.sdsalliance.org/post/rtwf-grant-prime-editing-gene-therapy-sds69f967657c961ad0b9fc7383Thu, 07 May 2026 12:28:06 GMTEszter Hars, PhD<![CDATA[Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS]]>https://www.sdsalliance.org/post/your-data-is-safe-sds-gps-privacy69f12229ddc36f176232be26Tue, 28 Apr 2026 21:55:12 GMTEszter Hars, PhD<![CDATA[Living with Shwachman-Diamond Syndrome: What Lab Tests Can't Tell Us]]>https://www.sdsalliance.org/post/shwachman-diamond-syndrome-quality-of-life69ca80ca595b1ffbde1dd2daThu, 02 Apr 2026 13:00:17 GMTEszter Hars, PhD<![CDATA[Project PACER: Building Shwachman-Diamond Syndrome Education Together]]>https://www.sdsalliance.org/post/project-pacer-community-survey69a99be995f896866354fdecThu, 05 Mar 2026 15:42:49 GMTEszter Hars, PhD<![CDATA[2025 Impact Report: How the SDS Community Is Advancing Research Toward Therapies]]>https://www.sdsalliance.org/post/2025-impact-report695fd694a99be99d18f177e1Fri, 09 Jan 2026 13:15:09 GMTEszter Hars, PhD<![CDATA[Introducing Monthly Giving Allies: How Small Monthly Gifts Help Accelerate SDS Research and #CureSDS]]>https://www.sdsalliance.org/post/monthly-giving690f65796509164f21b1674eSat, 08 Nov 2025 16:29:53 GMTEszter Hars, PhD<![CDATA[Octavian's SDS Story 2: A Rare Gem with EFL1, Year Two]]>https://www.sdsalliance.org/post/octavian-sds-story-2690934efc7ef5d7517fabf0dMon, 03 Nov 2025 23:17:47 GMTSDS Community Member<![CDATA[Understanding Your Genetic Testing Report: Key Elements for the Shwachman-Diamond Syndrome (SDS) Community and Why it Matters]]>https://www.sdsalliance.org/post/genetic-testing-report6908bd06ed61829ba04b9e7bMon, 03 Nov 2025 21:23:24 GMTSDS Alliance Team<![CDATA[SDS Alliance awarded PCORI Engagement Award funding to build capacity for patient-centered CER for Shwachman-Diamond Syndrome.]]>https://www.sdsalliance.org/post/pcori-award-capacity-patient-voice68864f253e8ce4b0741fb0d9Sun, 27 Jul 2025 17:23:46 GMTEszter Hars, PhD<![CDATA[FDA provides positive feedback on the SDS EL-PFDD meeting, valuing the Patient Voice]]>https://www.sdsalliance.org/post/sds-patient-voice-pfdd-fda-feedback685c34426092e10b7c56b35cWed, 16 Jul 2025 19:24:46 GMTEszter Hars, PhD<![CDATA[Reflections from Cincinnati 2025 and impact of the patient voice]]>https://www.sdsalliance.org/post/cincinnati-20256859a0beb62ad3b0c7a42594Mon, 23 Jun 2025 20:52:15 GMTEszter Hars, PhD<![CDATA[SDS Patient LENS Study Now Open]]>https://www.sdsalliance.org/post/_lens679e1b7fce173527580bd175Sat, 01 Feb 2025 15:30:03 GMTEszter Hars, PhD<![CDATA[Register for Community Webinar and Q&A to prep for SDS PFDD Meeting]]>https://www.sdsalliance.org/post/sds-pfdd-intro678bcbf50f2a72cbfa990d2dSat, 18 Jan 2025 15:30:03 GMTEszter Hars, PhD<![CDATA[Amazing Opportunity to Share SDS Patient Perspectives with FDA: EL-PFDD Meeting Planned June 4th, 2025]]>https://www.sdsalliance.org/post/sds-pfdd677984f259e2380319060d2dTue, 07 Jan 2025 15:30:03 GMTEszter Hars, PhD<![CDATA[SDS-POPS 2024 Recordings and Resources Now Available! SDS Alliance Blog 2024-12-08]]>https://www.sdsalliance.org/post/sds-pops-20246755cb0ab2f85d7142a03b9aSun, 08 Dec 2024 15:30:03 GMTEszter Hars, PhD<![CDATA[Insights from the ESH Translational Research for IBMF Conference and the French Neutropenia Registry Day. SDS & Science Snapshots (2024-11-23)]]>https://www.sdsalliance.org/post/sds-science-snapshots-2024-11-09-167430d1a4994cdd8f79d5283Sun, 24 Nov 2024 15:30:03 GMTEszter Hars, PhD<![CDATA[SDS & Science Snapshots (2024-11-16)]]>https://www.sdsalliance.org/post/sds-science-snapshots-2024-11-1667339a8e31756b3948dc05a2Sat, 16 Nov 2024 15:30:10 GMTAshley Thompson, MS, CGC, Genetics Project Manager @ SDSA<![CDATA[SDS and Diabetes: SDS & Science Snapshots (2024-11-09)]]>https://www.sdsalliance.org/post/sds-science-snapshots-2024-11-09672e8978c5b10d5e5bc6a973Sat, 09 Nov 2024 15:30:03 GMTAshley Thompson, MS, CGC, Genetics Project Manager @ SDSA