Category: Community Partners
Xentria Announces FDA Orphan Drug Designation for XTMAB-16 in Sarcoidosis
Xentria Inc. has recently announced they received Orphan Drug Designation from the U.S. Food and Drug Administration (FDA) for their intravenous TNF-inhibitor, XTMAB-16. The FDA grants orphan status to drugs being developed to treat those with rare diseases. This...Boehringer Ingelheim Therapy for COVID-19 Advances to Phase 2
The following is an exciting announcement from an FSR partner, Boehringer Ingelheim – see the release on their website here. Boehringer Ingelheim Begins Phase 2 Clinical Trial of a Targeted Therapy to Help People with Severe Respiratory Illness from COVID-19...
NORD offers financial assistance to rare community for COVID-19
FSR is a proud member of NORD, the National Organization for Rare Disorders. On April 15th, NORD announced the creation of a program to provide financial assistance for members of the rare disease community who have been impacted by COVID-19. Read the release below or...
Making Homemade Masks for National Jewish Health
Help FSR support our partners in the healthcare system during COVID-19Like many healthcare systems across the country and world right now, FSR’s friends at National Jewish Health in Colorado are experiencing a shortage of Personal Protective Equipment, or PPEs....
WEBINAR: A Rare Response: Addressing the COVID-19 Pandemic
FSR is a proud member of the National Organization for Rare Disorders, or NORD. Our friends at NORD are hosting an informational webinar about rare disease patients and the COVID-19 pandemic.A Rare Response: Addressing the Covid 19 PandemicTuesday, March 31, 20202:00...
Better Breather Clubs Welcome Sarcoidosis Warriors this April!
FSR is excited to once again be partnering with our friends at the American Lung Association for Sarcoidosis Awareness Month this April! This year, our partnership will extend to ALA’s Better Breathers Clubs, which are support groups for patients and caregivers...
FSR Attends Hill Day
On Oct. 2nd and 3rd FSR’s Executive Director, Ginger Spitzer, was able to travel with PAR to Washington D.C for ATS Hill Day.
Become a Sarcoidosis Advocate in Your Hometown!
Rare disease patients find out soon after a diagnosis that they’ll have to learn advocate for themselves- in the doctors office, to insurance companies, and even to the government. Unfortunately, rare diseases are still often overlooked in legislation, even though...