According to a recent article, a child with biliary atresia was able to celebrate her first birthday following her liver transplant. Biliary Atresia Biliary atresia is a condition occurring in…
According to a recent article, a new study is demonstrating how the effects of distal renal tubular acidosis impact a patient’s quality of life. Distal Renal Tubular Acidosis (dRTA) Distal…
According to a recent article, scientists have discovered that epigenetic landscapes have a big role in the way cancer cells potentially respond to therapy initially. “Persisters” There are cancer cells…
According to a recent article, LUNGevity has just launched a resource platform that provides information, news, and community for patients diagnosed with ALK-positive lung cancer. ALK Positive Lung Cancer Anaplastic…
According to a recent article, the results of a new study show that using recombinant human growth hormone to treat children with idiopathic short stature and growth hormone deficiency aids…
According to a recent article, researchers have created a new screening tool that will aid in discovering if patients with chronic idiopathic axonal polyneuropathy have the TRR mutation. Hereditary Transthyretin…
According to a recent article, the biopharmaceutical company Amryt has announced a study looking at Mycapssa to treat patients with carcinoid symptoms as a result of neuroendocrine tumors (NET). Neuroendocrine…
According to a recent article, researchers at the WORLDSymposium revealed they are looking into using pentosan polysulfate sodium to treat Maroteaux-Lamy syndrome. MPS VI (Maroteaux-Lamy Syndrome) Maroteaux-Lamy syndrome is…
According to a recent article, a study has found that denosumab therapy leads to patients with osteoporosis having a higher risk of getting osteonecrosis of the jaw in comparison to…
According to a recent article, investigators have proposed a checklist that will aid in determining the strength of potential gene-disease relationships for rare disease. The Need It has already…
According to a recent article, last week was Porphyria Awareness Week, a week dedicated to recognizing and uniting those who are a part of the porphyria community. Porphyria Porphyria is…
According to a recent article, the treatment for macular edema associated with uveitis, Xipere, is now available in the United States. Uveitis Uveitis is a term that refers to inflammation…
Recently, PFIC Voices released a guide for progressive familial intrahepatic cholestasis (PFIC) patients and families that will help them understand the condition and how they can get support. Progressive Familial…
According to a recent article, the results of a new study shows that patients that are diagnosed with Marfan syndrome and an aortic aneurysm or dissection are at a…
According to a recent article, Canadian actor Cameron Mathison opened up about dealing with Legg-Calve-Perthes disease throughout his childhood. Perthes Disease Perthes disease is a condition that affects the hips…
An article recently highlighted the stories of young patients with Ehlers-Danlos syndrome and how they are taking their diagnoses to spearhead research about the rare disease. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos…
A recent article discusses the various relationships between osteoporosis, osteonecrosis, and bisphosphonate medications. Osteoporosis (Paget’s Disease) Osteoporosis causes bones to become weak and brittle — so brittle that a fall…
According to a recent article, researchers have found that a sensitivity to sounds such as chewing or breathing may actually be caused by misophonia. Misophonia Misophonia, which literally translates to…
According to a recent article, the Hamoui Foundation and LUNGevity Foundation granted $1 million to three researchers in order to study RET-positive lung cancer. RET-Positive Lung Cancer There are two…
Munique Slongo is a rare disease patient diagnosed with Fabry disease. She has taken the time to share her story about what life with this diagnosis has been like. Fabry…
According to a recent article, although the number of ticks are rising in Germany currently, the cases of tick-borne encephalitis have been surprisingly lower. Researchers found that this is due…
Recently, two medical professionals were interviewed where they discussed their recommendations for the guidelines pertaining to managing psoriatic arthritis. Psoriatic Arthritis Psoriatic arthritis is a type of inflammatory arthritis that…
The month of March has been declared to be Multiple System Atrophy Awareness Month, thanks to a campaign headed by the MSA Coalition. Multiple System Atrophy (MSA) Multiple system atrophy…
According to a recent article, a new study looked into the histopathologic spectrum of patients with monoclonal gammopathy of renal significance (MGRS). Monoclonal Gammopathy of Undetermined Significance (MGUS) Monoclonal gammopathy…
A recent article shared the story of one family’s journey with multiple family members being diagnosed with progressive familial intrahepatic cholangitis (PFIC) after years of medical issues. Progressive Familial Intrahepatic…
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