According to a story from abc.net.au, an unusual and poorly known rare disease has been making its presence known in the country of Australia. This disease is called mal de…
According to a story from Charcot-Marie-Tooth News, a recent study has revealed that patients with Charcot-Marie-Tooth disease (CMT) type 1A still display signs of muscle weakness even if they retain…
Cure GM1 Foundation is hosting a family meeting filled with hope on Friday, September 20th! This gathering will be focused on community, clinical development and research updates, patient advocacy, and…
Families in England affected by Batten disease are struggling to access effective treatments in their home country. Nicole and Jessica Rich are two young girls who live with their families…
TGIF! Something we believe is that the stories of rare disease patients are vitally important. This week, we're highlighting two articles written by patients, as well as a story about…
According to a story from news-medical.net, a recent study is giving scientists new insights into the nature of Merkel cell carcinoma, a rare cancer that affects the skin. The study…
According to a story from Comic Sands, mother Alison Beesley is now committed to taking care of her daughters Eliza and Eleanor full time. Eliza is nine years old and…
Scientists have discovered an immune suppressing cell to combat symptoms of multiple sclerosis. In a new study on mice, researchers have discovered a cell that can possibly be used to…
According to a story from Angioedema News, the drug development company Regenxbio has announced that it is in the process of developing a new gene therapy treatment for hereditary angioedema,…
According to a story from Scleroderma News, a recent study has recommended that scleroderma patients with a rare, poorly understood form of interstitial lung disease (ILD) should receive regular monitoring…
According to a story from The People's Pharmacy, the health dedicated website (along with many other sites that discuss drug effects and side effects) has experienced a nearly 50 percent…
According to a publication from EurekAlert, a recent study helmed by the Royal Marsden NHS Foundation Trust suggests that female cancer patients tend to live slightly longer following treatment than…
When Amber Freed and her husband Mark resorted to an in-vitro fertilization (IVF) baby they were overjoyed when they found out they were pregnant and were welcoming two new…
According to a story from outsourcing-pharma.com, the company Iqvia has just launched its all-new patient portal. However, while many patient portals are intended to allow for patients to monitor their…
According to a story from The Indian Express, early treatment and diagnosis of primary immunodeficiencies makes management of this group of disease much simpler as a whole. In children, the…
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A study appeared recently in the Orphanet Journal of Rare Diseases reporting that rare diseases affect 350 million people worldwide. The definition of rare disease differs between the United States…
According to a story from kfor.com, Governor Kevin Stitt of Oklahoma recently held a signing ceremony for a bill that is being hailed as a rare example of bipartisan collaboration…
Happy Thursday! This week, we're highlighting an article about the neglect of policies meant to protect people with IBD. Next, we have stories on two recent studies affecting MS and…
Our partner organization, The MDS Foundation, Inc., is sponsoring another free myelodysplastic syndromes (MDS) Patient & Family/Caregiver Forum in Nashville, Tennessee. When: Thurs., September 19, 2019, 9:00am – 2:30pm Where:…
According to a story from sectorpublishingintelligence.co.uk, the biopharmaceutical company Rhythm Pharmaceuticals, Inc., has recently announced the results from two phase 3 clinical trials. These trials were testing the company's experimental…
According to a story from EurekAlert!, a team of researchers affiliated with UT Southwestern were successfully able to curtail inflammation-associated colorectal cancer in mice by precisely editing the animals' gut…
According to a story from EurekAlert!, the results of a recent clinical trial should get the attention of patients in the US with the rare disorder familial chylomicronemia syndrome. The…
According to a story from Newswise, Quest Diagnostics, a laboratory that specializes in diagnostic information, has announced plans to participate in a unique, large scale trial called NCI-MATCH, which stands…
Critical Path Institute The Critical Path Institute, or C-Path is a nonprofit organization which was established in 2005. It has a US branch, headquartered in Tucson, Arizona as well as…
As covered in Stat and True Viral News, ALS made a name for itself in 2014 when their donations campaign, the ice bucket challenge, went viral, earning $115 million dollars…
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