NORD, the National Organization for Rare Diseases, sent out their happiest wishes for the holidays, their utmost gratitude for 2017, as well as their plan of attack for the New Year, reported RareDR. The NORD community Director, Paul Melmeyer, sent out a video thanking all the amazing advocates out that that stood up and made a change in 2017. Melmeyer also updated the community on the recent happenings with the Orphan Drug Act, and while the outcome is far from what they wanted, Melmeyer is grateful for all the fighting and advocacy that still kept the Act from being completely cut.
News regarding what will happen with the Orphan Drug Act has been floating around the last couple months, and now it’s much more clear of how things will play out. The House of Representatives passed the conference reports of the Tax Cut and Jobs Act, which will cut funding for the Orphan Drug Act in half, but not get rid of it completely like the House originally wanted to do. It will most likely continue and get passed by the Senate and president Trump later this week. Melmeyer reiterates the tax cut is not ok. However, because the community banded together, writing emails, letters, and blasting social media, legislators listened and didn’t remove it completely.
NORD also shared with the public the new research grants they will be awarding this new year, those including: Cincinnati Children’s Hospital Medical Center, USD, Uniformed Services University of the Health Sciences in Bethesda, INSERM, and USC School of Medicine. All these grants will go directly to the research of rare diseases. NORD also has shared new guides for physicians to help early diagnosis and top performing treatment. Additionally, they shared reports that will be for patients and caretakers themselves. Lastly, there is a new report for Li-Fraumeni Syndrome, specifically patients, and they are free to patients anywhere.
