July 2024
- Jul 1, 2024 Nonverbal Cognitive Skills in Children With AGS Jul 1, 2024
June 2024
- Jun 11, 2024 AGSAA Launches Our New Contact Registry Jun 11, 2024
April 2024
- Apr 18, 2024 RNA-targeted Therapy Offers Breakthrough in Aicardi-Goutières Syndrome Apr 18, 2024
December 2023
- Dec 11, 2023 Biogen Survey Re-Opened until 12/31!!! Use Your Voice Now to Impact Clinical Trial Design in 2024! Dec 11, 2023
September 2023
- Sep 18, 2023 AGS Community Exceeds Expectations: Pausing the Biogen Patient Registry Study Sep 18, 2023
- Sep 17, 2023 Introducing the Faculty Members of the Aicardi-Goutieres Syndrome ECHO Program Sep 17, 2023
- Sep 12, 2023 Contribute to AGS Clinical Trial Development: Join the Biogen Study Sep 12, 2023
August 2023
- Aug 15, 2023 Webinar: Biogen, Clinical Trials, and the AGSAA Patient Registry Aug 15, 2023
July 2023
- Jul 31, 2023 Watch the Replay, AGS @ the 2023 ULF Family Conference Jul 31, 2023
May 2023
- May 22, 2023 The AGSAA and Transposon Therapeutics, Inc. Collaborate To Empower Patients to Make Informed Decisions About Participation in Clinical Trials. May 22, 2023
- May 16, 2023 The Aicardi Goutieres Syndrome ECHO Program May 16, 2023
April 2023
- Apr 29, 2023 Muscle Tone Management Apr 29, 2023
March 2023
- Mar 15, 2023 The AGS Scale Mar 15, 2023
January 2023
- Jan 30, 2023 Reverse Transcriptase Inhibitors & AGS Jan 30, 2023
- Jan 23, 2023 The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) FY23 Funding Opportunities Jan 23, 2023
- Jan 23, 2023 Late-Onset AGS Jan 23, 2023
November 2022
- Nov 29, 2022 2022 Giving Tuesday Campaign Nov 29, 2022
- Nov 8, 2022 Tells Us Your JAK Inhibition Story Nov 8, 2022
October 2022
- Oct 30, 2022 Flu and RSV Are on the Rise! Oct 30, 2022
- Oct 18, 2022 Introducing the AGSAA Podcast Oct 18, 2022
- Oct 14, 2022 SARS-CoV-2 mRNA-based vaccines in the Aicardi Goutières Syndrome Oct 14, 2022
August 2022
- Aug 31, 2022 Leukodystrophy Awareness Month, Meet Aicardi-Goutieres Syndrome (AGS) Aug 31, 2022
- Aug 26, 2022 An Open Letter to AGS Physicians Aug 26, 2022
- Aug 24, 2022 With Gratitude, In Memory of Geoffrey J. McHale Aug 24, 2022
- Aug 18, 2022 Our Bittersweet Story of an Effective Treatment Just Out of Reach Aug 18, 2022
- Aug 15, 2022 Eli Lilly, Advance Mission to Support Debilitating Brain Disease With Proven Medication Aug 15, 2022
- Aug 12, 2022 Patient Registry Participant Breakdown, August 2022 Aug 12, 2022
- Aug 12, 2022 Introducing AGSAA Grant Awardee, Dr. Barney Viengkhou Aug 12, 2022
- Aug 11, 2022 Driving Newborn Screening To The Next Stage Aug 11, 2022
- Aug 9, 2022 A Helping Hand When You Need it Most Aug 9, 2022
July 2022
- Jul 28, 2022 AGS Patient Registry Virtual Walkthrough, Enrolling and Participating Jul 28, 2022
- Jul 20, 2022 Introducing AGSAA Grant Awardee, Dr. Jessica Garau Jul 20, 2022
- Jul 17, 2022 AGS Patient Registry Introduction and Perspective Jul 17, 2022
- Jul 1, 2022 AGS Researchers Are Not So Rare! Jul 1, 2022
June 2022
- Jun 26, 2022 Relapse and Recurrent Flares Appear Common and Impactful to AGS Families Jun 26, 2022
- Jun 3, 2022 Documenting and Characterizing AGS Triggers and their Consequences Jun 3, 2022
- Jun 3, 2022 Modeling Areas of Concern for AGS Families, Stage 2 Jun 3, 2022
May 2022
- May 26, 2022 Applications Submitted for Multiple Patient-Partnered Collaborations (PPC) Grants May 26, 2022
- May 20, 2022 COVID-19 Vaccine Guidance May 20, 2022
- May 13, 2022 Join Our Growing Team May 13, 2022
- May 12, 2022 Additional Support and Resources for Securing Treatment with JAK Inhibitors May 12, 2022
- May 4, 2022 Register As an Organ Donor, Help Cure AGS May 4, 2022
- May 2, 2022 Patient Registry Breakdown, May 2022 May 2, 2022
April 2022
- Apr 27, 2022 Message the AGSAA on WhatsApp! Apr 27, 2022
- Apr 25, 2022 📣 The AGSAA Goes Global 🌍 Apr 25, 2022
- Apr 23, 2022 Modeling Areas of Concern for AGS Families Apr 23, 2022
- Apr 8, 2022 Early Data About COVID-19 Experiences (Infection and Vaccination) Apr 8, 2022
- Apr 6, 2022 Accelerating Research Through Patient Advocacy Apr 6, 2022
March 2022
- Mar 24, 2022 Documenting Experiences with COVID-19 in AGS Mar 24, 2022
- Mar 23, 2022 Developing Therapies and the Importance of Patient and Family Reported Outcomes Mar 23, 2022
- Mar 16, 2022 Request For Applications, AGSAA Young Investigator Grant Mar 16, 2022
- Mar 14, 2022 Industry Partners, Promising Developments! Mar 14, 2022
- Mar 8, 2022 Patient Registry - Safety of COVID Vaccination in AGS Investigation Mar 8, 2022
February 2022
- Feb 28, 2022 Rare Disease Day! Rare Researcher Fundraiser! Feb 28, 2022
- Feb 27, 2022 AGS Dads Unite! Feb 27, 2022
- Feb 27, 2022 AGS Community Driven Innovation and the Patient Registry Feb 27, 2022
- Feb 26, 2022 Rare Disease Day Fundraiser for the AGSAA Rare Researcher Grant Feb 26, 2022
- Feb 22, 2022 Next Step for the Patient Registry, a COVID/Pandemic Study Feb 22, 2022
- Feb 18, 2022 Post Symposium Update Feb 18, 2022
- Feb 12, 2022 Patient Registry Enrollment Picks Up Speed! Feb 12, 2022
- Feb 3, 2022 AGSAA, Biogen, LunaPBC, and Genetic Alliance Launch Community-Led Discovery Program for Aicardi-Goutières Syndrome Feb 3, 2022
- Feb 3, 2022 2021 ACR and EULAR Recommendations Regarding Diagnosis and Treatment of AGS Feb 3, 2022
January 2022
- Jan 28, 2022 Join Our AGS Dads Group! Jan 28, 2022
- Jan 27, 2022 AGS Patient Registry Jan 27, 2022
- Jan 20, 2022 2022 AGS Family Symposium Jan 20, 2022
- Jan 5, 2022 AGSAA Tea Party Jan 5, 2022
December 2021
- Dec 20, 2021 Holiday Gift Guide Dec 20, 2021
- Dec 16, 2021 AGSAA December 2021 Survey Dec 16, 2021
- Dec 15, 2021 Signup For Our Secret Video Gift Swap Dec 15, 2021
November 2021
- Nov 30, 2021 Together We Gave! Nov 30, 2021
- Nov 30, 2021 Giving Tuesday 2021 Nov 30, 2021
October 2021
- Oct 27, 2021 October 2021 Newsletter Oct 27, 2021
July 2021
- Jul 12, 2021 The NHS in the UK recommends baricitinib for children with AGS Jul 12, 2021
January 2017
- Jan 2, 2017 When I Watched My Brother Take His First Steps With a Rare Condition Jan 2, 2017
- Jan 2, 2017 Middleton Farm that yielded $1,400 for AGSAA! Jan 2, 2017
- Jan 2, 2017 Harris' Heroes: Amazing 8-year-old girl honors friend, raises money for AGS research Jan 2, 2017
- Jan 2, 2017 VT Toddler Fighting Rare Disorder Jan 2, 2017
August 2016
- Aug 12, 2016 7-Year-Old With Rare Disease Dies Day After Becoming Honorary Marine Aug 12, 2016
- Aug 12, 2016 My Brother, the Hospice Graduate Aug 12, 2016

Back to Top