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For you in this issue:  Annual Report | MDS World Awareness Day | COVID-19 Survey from NIH | October/November Webinars | MDS Toolkit | New Patient Survey | MDS Clinical Trial | Research and Treatment NEWS | NIH COVID + Aplastic Anemia Survey | Giving Tuesday

Celebrate all who gave answers, support, and hope to patients and families during 2019 - the Annual Report is ready! Learn how lives were changed here.

 

All week we'll be featuring patient stories and news about MDS, in addition to our contribution to the #FacesofMDS Campaign. 

AND, what would you tell MDS? Send your "Dear MDS" letter to baker@aamds.org.  

 
 

Final Webinars in October

 

Webinars Coming in November:

 

Were you diagnosed between 2015 and 2020?  

If so, please help by taking this 4-minute survey.

Hurry, the deadline is October 31, and Thank You!

 

Find out more about how these tools can help you manage your treatment!

 

IMerge is a two-part Phase 2/3 clinical trial of imetelstat in transfusion dependent patients with lower-risk MDS who are relapsed after or refractory to erythroid stimulating agents (ESAs). The Phase 3 portion is planned to enroll approximately 170 patients in a randomized (2:1 ratio of imetelstat:placebo), double-blind, placebo-controlled clinical trial to test the hypothesis that imetelstat improves the rate of red blood cell transfusion independence (TI). 

 

News for Haploidentical Transplant:

Gamida Cell Announces Positive Topline Data on Secondary Endpoints from Phase 3 Clinical Study of Omidubicel in Patients with Hematologic Malignancies

More information at the link above and here: Fact Sheet

Clinical Trial information, including requirements here: 

https://www.aamds.org/treatments/clinical-trials/multicenter-randomized-phase-iii-registration-trial-transplantation

Good News for PNH Treatment: 

Alexion Receives FDA Approval for New Advanced Formulation of ULTOMIRIS® (ravulizumab-cwvz) with Significantly Reduced Infusion Time

Press release here: https://ir.alexion.com/news-releases/news-release-details/alexion-receives-fda-approval-new-advanced-formulation

 

Complete an online survey to help @NIH researchers learn more about the impact of #COVID19 on patients with #AplasticAnemia, including patients with a dual diagnosis and those not in active treatment. 

https://redcap.link/covid_in_communities #coronavirus #rarediseases 

 
 
 
 

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