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A high calorie, high fat diet is needed for patients with cystic fibrosis (CF) to maintain a normal weight resulting in an emphasized focus on their nutrition and weight management.

Increased Risk of Eating Disorders, ARFID Among Cystic Fibrosis Population

The implementation of 13-valent pneumococcal conjugate vaccine (PCV13) was associated with an important reduction in the incidence of acute chest syndrome in children with sickle cell disease. 

New Evidence of S Pneumoniae in Acute Chest Syndrome

Latest monkeypox updates from CDC and WHO.

Latest Monkeypox Trends, Vaccines and Public Health Policy by CDC, WHO

In October, a new ICD-10-CM diagnosis code will be activated for APDS, a rare primary immunodeficiency disease, which will enable physicians and payers to add the diagnosis to patient charts for the first time in the US. 

CDC will Include New ICD-10-CM Diagnosis Code for a Rare Disease in Fall

Prior to the launch of FSR's webinar on pulmonary sarcoidosis, Mary McGowan, CEO, discusses the private listening session held with the FDA that addressed the critical needs in the field.

Mary McGowan: Pulmonary Sarcoidosis Listening Session with the FDA

There’s still much to be understood about gene therapy and its application to rare diseases like sickle cell, but at the progressive pace it’s moving at, gene therapy is likely to be integrated further into standard practice.

The Integration of Gene Therapy for Rare Disease

The American College of Physicians (ACP) aimed to inform on the ethical decision making regarding the integration of precision medicine and genetic testing into clinical care. 

The Ethical Responsibilities of Precision Medicine According to ACP

Investigators found that when assessing patients with sickle cell disease and neuropathic pain the TRPV1 receptor is a crucial component in the development of hypersensitivity and potential therapeutic benefit of capsaicin. 

Study Supports Capsaicin as Potential Pain Treatment for Patients with SCD

A 19 year-old patient presented with an isolated non-traumatic spontaneous epidural hematoma (EDH), an extremely rare consequence of sickle cell disease. 

A Rare Neurological Crisis: SCD Patient Presents with Fatal Extradural Hematoma 

Dr. Patrick Flume encourages clinicians to think a little differently when presented with a patient who has a chronic cough without an identifiable cause.

Patrick Flume, MD: Could a Persistent Cough be Bronchiectasis?

Sickle Cell

Sickle Cell condition center page, resources on the topics of medical news and expert insight into sickle cell disease can be found. Content includes articles, interviews, videos, podcasts, and breaking news on sickle cell research, treatment, and drug development.

Amyloidosis

The HCPLive amyloidosis page is a resource for medical news and expert insights on the rare disease. This page features expert-led coverage, articles, videos and research on the therapies and development of treatments for amyloid buildup, and more.

Duchenne Muscular Dystrophy

On the HCPLive Duchenne muscular dystrophy page, resources on the topics of medical news and expert insight into DMD can be found. Content includes articles, interviews, videos, podcasts, and breaking news on the rare disease, and more.

Huntington Disease

On the HCPLive Huntington disease page, resources on the topics of medical news and expert insight into HD can be found. Content includes articles, interviews, videos, podcasts, and breaking news on Huntington's chorea, and more.

Lysosomal Storage Disorders

Lysosomal storage disorders page, resources on the topics of medical news and expert insight into the rare diseases can be found. Content includes articles, interviews, videos, podcasts, and breaking news on lysosomal disorder disease research, treatment, and drug development.

The Rare Disease Report page is a resource for medical news and expert insights on rare diseases. This page features expert-led coverage, articles, videos and research on the therapies and development of treatments for sickle cell disease, multiple myeloma, and more.

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