Tags Posts tagged with "rare disease"

rare disease

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After the 10th International Workshop on Waldenstrom’s Macroglobulinemia for researchers and clinicians, the IWWM10 International Doctor- Patient Forum will be held in the same...

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Put Europe on your calendar for 2018! Usher patients, researchers and family members welcome to the two-day Symposium in July. For more information, contact ush2018@usher-syndrome.org
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Dravet Syndrome

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Saturday June 23rd is Dravet syndrome awareness day! Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year...
Choroideremia

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According to a story from BioPortfolio, the gene therapy company Nightstar Therapeutics recently released an announcement that the FDA issued Regenerative Medicine Advanced Therapy...
Dystrophic epidermolysis bullosa

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According to a story from pm360online.com, the drug development company ProQR Therapeutics N.V. will be partnering with EB Research Partnership (EBRP) and EB Medical...
Cystinosis

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According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father's Day in order to raise awareness about...
Langerhans Cell Histiocytosis

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Finding the right doctor for a patient can often be a long and personal process. It’s not just a matter of effectiveness or efficiency,...
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Rare Disease

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Happy Father's Day weekend! While Father's Day can be complicated in a rare family, rare parents deserve a round of applause. This week we have...
Rare Disease

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According to a story from pm360online.com, the speciality pharmaceutical company Chiesi USA and the biotech company Holostem Terapie Avanzate S.r.l. of Italy recently announced that...
Alagille Syndrome

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PatientWorthy will be offering a pair of tickets to the Alagille Syndrome Alliance's (ALGSA) First Annual Gala. The tickets will be available for patients...
Acute Myeloid Leukemia

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According to a story from med.miami.edu, a team of researchers working at the Sylvester Comprehensive Cancer Center, which is part of the University of...
Rare Disease

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The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is...
Hodgkin Lymphoma

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A Nigerian mother, Hafsat Aliyu has penned a moving tribute to her beautiful daughter, Zainab, who died of Hodgkin lymphoma, a type of blood...
Hemophilia

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Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s...
Rare Disease

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Medical Research Network (MRN) is an organisation that specialises in the conduct of clinical trial visits in the patient’s home and supporting clinical trial...
Dwarfism

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Mallory and Dave Holmes were excited. Like many couples, they were eagerly awaiting the birth of their first child. After 20 weeks of pregnancy,...
Hemophilia

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To the patient: Accepting your diagnosis doesn’t mean you can’t be mad about it. It simply means you understand that the reality of your...
Eosinophilic Esophagitis

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According to a story from the National Institutes of Health, a recent study has revealed that the absence of a specific protein in the...
Rare Disease

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According to a story from PLOS Medicine, most people will probably tell you that the anti-vaccine movement in the United States is a total...
Acromegaly

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According to PRNewswire, Express Scripts announced a new program to benefit people living with rare diseases on May 31st. The program, called Second Opinion...
editor's choice
Rare Disease

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Happy Friday everyone! This was a week with a highlight on research: we cover the state of ME/CFS information at the moment, an exciting treatment...
Acute intermittent porphyria

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According to a story from Rare Disease Report, Nichol Kirby, who was diagnosed with acute intermittent porphyria in 2015, faced an arduous path to...
Mesothelioma

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According to a story from pm360online.com, the clinical stage corporation Epizyme recently released detailed results from the Phase 2 trial of its leading investigational...
Beta Thalassemia

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According to a story from empr.com, a recent study revealed that gene therapy could allow patients with beta thalessemia to stop having to get...
Rare Disease

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Patient Worthy is proud to announce some new features to our website! Thanks to your valuable feedback, we have now enabled the personalization of your...
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