Rare Diseases

Great News! As a Survivor Leiomyoma Sarcoma Cancer! CANCER MOONSHOT "Ending Cancer as we know it" President Joe Biden The White House https://www.whitehouse.gov/cancermoonshot/
National Organization for Rare Disorders, Inc. (NORD) EveryLife Foundation for Rare Diseases Sarcoma Foundation of America, Inc.
Senator Charles E. Schumer Global Genes Research!America National Institutes of Health (NIH)

Cancer Moonshot | The White House The Cancer Moonshot is a White House initiative to bring renewed leadership to the fight against cancer, facilitate new collaborations, and drive progress across the cancer journey utilizing all facets of the oncology community - federal agencies and departments, private companies, healthcare provid...

Senators Patty Murray and Lisa Murkowski discuss the Advancing Menopause and Mid-Life Women’s Health Act, which aims to expand menopause research, education and awareness. May 16, 2024

FYI Women before Menopause Age are forced into Menopause Side Effects due to GYN Hysterectomy, presently there's not enough Medical Education or Safe Treatments (ie Estradiol can cause Cancer)

Video New legislation aims to expand menopause research and education Senators Patty Murray and Lisa Murkowski discuss the Advancing Menopause and Mid-Life Women’s Health Act, which aims to expand menopause research, education and awareness.

Research!America ZOOM Discussion on Cancer May 22, 2024 11:00 AM
Description As part of the National Institutes of Health, the National Institute of Allergy and Infectious Diseases (NIAID).

us02web.zoom.us

Dianna Campbell

Rare Disease Legislative Advocates Week! Sarcoma Foundation of America South Carolina Chapter EveryLife Foundation for Rare Diseases National Organization for Rare Disorders, Inc. (NORD)

Reminder February 29 World Rare Disease Day Sarcoma Foundation of America South Carolina Chapter Rare Disease Legislative Advocates Memorial Sloan Kettering Cancer Center American Cancer Society National Organization for Rare Disorders, Inc. (NORD) EveryLife Foundation for Rare Diseases

Memories! RDLA UMASS Cancer Prevention Conference Dianna Campbell Rare Disease Legislative Advocates Sarcoma Foundation of America South Carolina Chapter American Cancer Society

photos.onedrive.com OneDrive photos, enjoy, share & organize your photos

Happy New Year's Especially for those who Survived Rare Diseases!
Sarcoma Foundation of America South Carolina Chapter Rare Disease Legislative Advocates National Organization for Rare Disorders, Inc. (NORD) Leiomyosarcoma Support & Direct Research Foundation EveryLife Foundation for Rare Diseases

U.S. Food and Drug Administration Approved first Treatment for Sickle Cell Anemia approved Casgevy, the first CRISPR gene-editing therapy for sickle cell disease, paving the way for thousands of patients in the U.S. to receive a treatment that has been described as a "functional cure" for eligible patients.

The FDA also approved a gene therapy called Lyfgenia. Collectively, these two therapies represent two "milestone" treatments for sickle cell disease.
National Organization for Rare Disorders, Inc. (NORD) National Institutes of Health (NIH) Rare Disease Legislative Advocates

FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease The FDA approved the first cell-based gene therapies, Casgevy and Lyfgenia, for the treatment of sickle cell disease in patients 12 years and older.

Cancer Awareness Month

President Joe Biden Reduction Act Bill includes
Price Reduction
to
Rare Disease Legislative Advocates

President Joe Biden Reduced Prices of 10 Major Drugs. US Drugs costs over 1000% than selling same Drugs to Foreign Country. Rare Disease Insulin lower costs will done. Impact starts 2026.

Biden vs. Big Pharma: Medicare to Begin Negotiations to Lower Price of 10 Costly Drugs & Insulin The Biden administration has taken a major step to rein in price gouging for prescription drugs in the United States. Medicare will now be able to negotiate ...

MEMORIES EveryLife Foundation for Rare Diseases Rare Disease Legislative Advocates Sarcoma Foundation of America Tribute Wall US Capitol Building Washington DC LOBBY WEEK CAPITOL GROUP PHOTO

August 25 Weekend Visit Cannon House Office Building Washington, DC
Rare Disease Legislative Advocates National Organization for Rare Disorders, Inc. (NORD) EveryLife Foundation for Rare Diseases Sarcoma Foundation of America Tribute Wall NIH Office of Research on Women's Health
Congressman Dan Goldman
Thanks to meeting Jessee Rodriguez Aid &
Congressman James E. Clyburn
Carleton Baliff III Legislative Aid and Erin Meegan Deputy Chief of Staff & Legislative Director.