10th Cooley’s Anemia Symposium a Resounding Success

Wednesday, October 28th, 2015

October 28, 2015 – A packed house of 240 clinicians, scientists, nurses, industry, consumers and other participants attended the 10th Cooley’s Anemia Symposium in Rosemont, IL from October 18-22. This invaluable meeting, presented by the Cooley’s Anemia Foundation (CAF) and the New York Academy of Sciences(NYAS)  is an anticipated and milestone event held only every […]

Staten Island Chapter Holds Interactive Mystery Luncheon on November 15

Monday, October 26th, 2015

October 26, 2015 – Who doesn’t love a good mystery? And when there’s good food as well, it adds up to a perfect way to spend an afternoon. The Staten Island chapter of CAF will present the Without a Cue production of “Deadly Beloved,” an interactive mystery luncheon /show on Sunday, November 15 at 12:00 […]

Astoria Blood Drive on October 16

Tuesday, October 6th, 2015

October 6, 2015 – A special blood drive will be held in Astoria, NY on Friday, October 16 – and we hope anyone eligible to give blood will come and donate! Titled the “Greek Moms of New York Blood Drive,” this is being put together by CAF Board Member Maria Hadjidemetriou. The drive will be […]

CAF Speaks at FDA Pediatric Advisory Committee Meeting

Thursday, September 17th, 2015

September 17, 2015 – The FDA (Food and Drug Administration) Pediatric Advisory Committee (PAC) advises and makes recommendations to the Commissioner of Food and Drugs regarding a range of issues related to prescription drugs intended for use in the pediatric population. A panel of doctors and other medical specialists sit on this panel, with appropriate […]

Sideris Terminates Chelator Trial

Monday, September 14th, 2015

September 14, 2015 – Sideris Pharmaceuticals has announced that it has terminated its SP-420 development program. This Phase 1 study, entitled “Safety and Pharmacokinetic Study of Escalating Doses of SP-420, an Iron Chelator, in Patients With β-Thalassemia” (ClinicalTrials.gov identifier NCT02274233), was assessing safety and amount of the study drug in the blood after increasing doses […]

September 29 Webinar Will Focus on Clinical Trials

Monday, September 14th, 2015

September 14, 2015 – The FDA (Food and Drug Administration) Office of Minority Health is holding a special webinar on Tuesday, September 29, entitled “Get to Know ClinicalTrials.Gov.” The webinar, which will run from 11:00 a.m. – 12:00 noon (EDT) is intended to explain what a person can expect to find on ClinicalTrials.gov and how […]

Desferal No Longer Available in 2 Gram Doses

Thursday, September 3rd, 2015

September 3, 2015 – Novartis is no longer supplying Desferal in the 2 gram doses; it is still continuing to supply Desferal in 500 mg doses. Please check with your doctor, as your prescription may need to be altered to indicate that 500 mg doses should be used.

Suffolk Chapter Painting Under the Stars Event on September 22

Wednesday, September 2nd, 2015

September 1, 2015 – Join the Suffolk chapter of CAF for an evening of “Painting Under the Stars” on Tuesday, September 22. Come to Schafer’s Restaurant (111 W. Broadway in Port Jefferson, across from Port Jeff Harbor) for the 7:00 event. For an economical $35 donation, you receive instruction and painting materials to create a […]

FDA Pediatric Advisory Committee Meeting Will Review Exjade

Tuesday, August 25th, 2015

August 25, 2015 – On Wednesday, September 16, the Pediatric Advisory Committee (PAC) of the U.S. Food and Drug Administration (FDA) will meet to discuss pediatric-focused safety reviews, as mandated by The Food and Drug Administration Safety and Innovation Act (FDASIA) for several drugs. Included on the list of drugs to be reviewed is Exjade […]

Suffolk Chapter Car Wash a Hit

Saturday, August 15th, 2015

August 14, 2015 – The Suffolk chapter held a successful car wash fundraiser on August 1. Following is the chapter’s report on this well-attended event. Congratulations to Mike & Sarah Connolly! They put together an award winning car wash that raised $838. This is the first car wash the Suffolk Chapter has had in almost […]