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A better life with a rare disease: harmonising approaches to Newborn Screening - EURORDIS | #chronicillnessVOICE #health #patients #medical #research #pharma related newsletter for everyone #notjustpatients - Thu, Jan 21 2021

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Good morning check out my [DATE] #chronicillnessVOICE DAILY Newsletter via @Nuzzel [] [URL] #notjustpatients #healthnews #patient #health #medical #research #pharma #advocates
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Daily Commentary
Hello we hope you enjoy today's selection. Some may require subscription, may be commercial, event promotions, others aren't to replace the advice of your GP #HandsFaceSpace Carole & Alan #chronicillness #raredisease Time to #hibernate #winter
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The Voice of Rare Disease Patients in Europe
EURORDIS

Early diagnosis leads to a better life for people living with a rare disease. Newborn screening is a way to provide this: families are able to plan better for their child's care and treatment, and make informed decisions about future pregnancies.

Image not available FibroFlutters A better life with a rare disease: harmonising approaches to Newborn Screening
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Education and empowerment would provide more equal access to care -
pharmaphorum.com – Jan 20, 3:20 AM

Ella Balasa says she owes her life to the experimental phage therapy she was able access in no small part thanks to her scientific background. Her mission, she told pharmaphorum, is to ensure everyone has the knowledge and power they need to…

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Hematopoietic stem cell transplants may provide long-term benefit for people with multiple sclerosis
Medical Xpress – Science X staff – Jan 20, 1:00 PM

A new study shows that intense immunosuppression followed by a hematopoietic stem cell transplant may prevent disability associated with multiple sclerosis (MS) from getting worse in 71% of people with relapsing-remitting MS for up to 10 years…

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Convalescent plasma donations for COVID-19 restarting
Home – Jan 20

NHS Blood and Transplant is restarting COVID convalescent plasma donations, after discussions with the Department of Health and Social Care. Donations were paused on Friday following interim analysis from the RECOVERY and REMAP-CAP trials which…

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Specialised Commissioning Patient and Public Voice (PPV) roles
NHS England

NHS England Specialised Commissioning is recruiting PPV members to its Clinical Reference Groups (CRGs). CRGs bring together groups of clinicians, commissioners, public health experts, patients and carers. They use their specific knowledge and…

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New Parkinson's disease therapeutics discovered
Medical Xpress – Science X staff – Jan 20, 4:36 AM

Ben-Gurion University of the Negev researchers have discovered that the protein BMP5/7 offers promising therapeutics that could slow down or halt the progression of Parkinson's disease. The findings were published in the clinical neurology journal…

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Cancerous moles: Symptoms, treatment, prevention, and more
Medical News Today

A cancerous mole is the most common sign of melanoma of the skin. This is a type of skin cancer. A cancerous mole is typically a new mole or an existing mole that has undergone certain changes. Although not every new or changing mole is cancerous…

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Not feeling motivated to tackle those sneaky COVID kilos? Try these 4 healthy eating tips instead
The Conversation – Clare Collins – Jan 19, 11:07 AM

In Australia and around the world, research is showing changes in body weight, cooking, eating and drinking patterns associated with COVID lockdowns. Some changes have been positive, such as people cooking at home more, and eating more vegetables.

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