Sickle Cell Patients and Families Continue to Fight
It's a fight they didn't choose, but it's a fight they have to face. Individuals diagnosed with sickle cell expressed how much they have to do to get the bare…
It's a fight they didn't choose, but it's a fight they have to face. Individuals diagnosed with sickle cell expressed how much they have to do to get the bare…
Researchers from Duke Health are hoping to discover new treatments for Lyme disease since the only way to currently manage the disease is by taking consistent antibiotics, which can be…
Rett syndrome might limit 8-year-old Laurel Cooper's ability to speak and do every day tasks, but it doesn't hold back her spunky, sassy attitude, reports University of Wisconsin-Madison News. She will…
15-year-old Jonathan Gutierrez might just be the youngest superhero to date. Recently, a video of him went viral showing how he's sacrificed a lot of his youth to take care…
Originally reported by the Vancouver Sun, children from Langley B.C. are standing up to request access to a potentially life-changing drug as they face the day to day pain onset…
A new fundraising challenge is sweeping all social media platforms once again for amyotrophic lateral sclerosis (ALS), first reported Mom.me. Back in 2014, the ice bucket challenge was a wild success, being…
Researchers from St. Jude Children's Hospital might have just developed a new gene therapy that can build a healthy, functioning immune system for patients suffering from severe combined immunodeficiency, SCID,…
London specialists at the King's College hospital believe they should take an 11-month-old baby Isaiah suffering from multiple diseases off life support to avoid any further pain, reported The Guardian.…
Minoryx Therapeutics is on their way to making strides for patients with adrenomyeloneuropathy, also known as AMN, reports Labiotech. They just started their phase II initiative to test patients for…
A recent study conducted by researchers from National University of Singapore Medicine laboratory shows that eating vegetables, specifically broccoli, might prevent and even kill cancer cells that develop into colorectal…
A little more hope is given to individuals suffering from Lennox-Gastaut syndrome and Dravet syndrome as GW Pharmaceuticals shared the U.S. FDA will indeed be accepting their application for potential…
Living with the rare condition subglottic stenosis is never easy, especially when you're trying to keep up with your little boy. Caledon Enterprise reported that Emily Rogers does just that. She…
Out-of-pocket expenses for rare disease are astronomical, and the Ministry of Health (MOH), is taking time to find a more positive way to help benefit children and their families burdened…
Everyone is guilty of blaming back pain on stress stemming from work and life in general, but there becomes a point when one has to realize something might just not…
25-year-old Zoey Wright is a real force of nature! Having been diagnosed with the rare disease ulcerative colitis she found herself dependent upon a colostomy bag, yet that didn't stop…
The FDA approved a human study to be conducted by Swedish Orphan Biovitrum AB to treating mucopolysaccharidosis type lllA patients with a new drug called SOB1003, reported European Pharmaceutical Review. Not only…
The holidays are a little extra special for best friends Diana Caldon and Stephanie Smith. As optimistic cancer survivors, these two refuse to let holidays get away from them and…
The Alabama Rare Disease community has come together to host a special week in honor of the upcoming date February 28th, 2018, which is now the official International Rare Disease…
When Terry Jo Bichell learned her son was diagnosed with Angelman syndrome, but little knowledge existed on the disease, she decided to get her PhD and do research herself, reported…
Ded Rranxburgaj, 48, currently living in Southgate, Michigan is being threatened with deportation, although his wife suffering from multiple sclerosis, reported MSN News. While fighting the deportation from every angle, Ded…
Patients suffering from the rare blood disease, hemophilia, deal with daily demands of their treatment. A recent study supports self-infusion for these patients, reported Harrison Daily Times. Self-infusion is when…
Reported by Strait Times, it was announced by Ministry of Health last week that there may be a potential fund developed to help children who suffer not only from a…
The gene therapy development company, AveXis, Incorporation, just announced that they will be expanding their clinical trial development program for the potential gene therapy treatment: AVXS-101, reported Globe News Wire.…
According to BBC News, a new universal blood test is receiving a lot of buzz due to it's potential to detect early stages of cancer. A research team at John…
The Driscoll family is left devastated and shocked after receiving a letter from social services that states the government could be taking their daughter, who is suffering from Rett syndrome,…