Topics

Rare Disease Communications Company Profile

22:17 EDT 15th September 2019 | BioPortfolio

Rare Disease Communications® is a healthcare communications and media company focused on the rare disease community and dedicated to raising awareness of rare diseases and orphan drugs so that patients will be diagnosed and treated more efficiently. Rare Disease Communications® is part of the Michael J. Hennessy Associates, Inc. family of businesses, based in Cranbury, N.J. MJH Associates is dedicated to improving quality of life through healthcare education, research and communication. To learn more, visit http://www.mjhassoc.com.


News Articles [2119 Associated News Articles listed on BioPortfolio]

Rare diseases: understanding the patient journey

In the shadow of Rare Disease Day on 28 February 2019, Dr Kevin Robinson met with Zizi Imatorbhebhe, Senior Director of Strategic Development and Head of PAREXEL’s Rare Disease Center of Excell...

Rare Disease Roundtable: Dealing With Pricing Pressure

Part 2: High costs are built into the rare disease business model. Participants at a roundtable discussion led by Scrip...    

Amryt to expand rare disease portfolio with $311m Aegerion merger

Rare disease specialist Amryt Pharma plans to expand its rare disease portfolio with the acquisition of troubled Aegerion Pharmaceuticals, a division of Canada’s Novelion. Aegerion holds US rights ...

Rare Disease Day: Unmet medical need inspires biopharmaceutical innovation

Today is Rare Disease Day, an annual reminder of the incredible community of patients living with a rare disease. In the U.S., rare diseases are classified as conditions that affect fewer ...

BioMarin's Very-Rare Disease Treatment Approved in China

BioMarin, a San Francisco area rare disease biopharma, reported China's NMPA approved Vimizim® (elosulfase alfa) to treat patients with mucopolysaccharidosis type IVA (MPS IVA), a rare disease als...

FDA Speeds Innovation in Rare Disease Therapies

The Food and Drug Administration Office of Orphan Products Development is launching web-based educational resources for patients and industry on rare disease topics. The page debuts on International R...

Rare Disease Roundtable: How Rare Is Too Rare?

Part 1: Execs from rare disease-focused companies weighed in on investor sentiment during a roundtable discussion led by Scrip at...    

Clinical Outcome Assessment Selection for Rare Disease Trial Programs

Evidera has published an informative article to provide some baseline knowledge about the “why, who, what, and how” when it comes to clinical outcome assessments for rare disease trials. Read the ...

Drugs and Medications [1 Associated Drugs and Medications listed on BioPortfolio]

Sterile water [genentech, inc.]

Sterile Water for Injection, USP

PubMed Articles [3781 Associated PubMed Articles listed on BioPortfolio]

The Case for the Use of Patient and Caregiver Perception of Change Assessments in Rare Disease Clinical Trials: A Methodologic Overview.

The traditional model of evaluating treatments based primarily on primary outcome measures has stumbled in its application to rare disease. Rare disease clinical trials face the methodological challen...

Identifying gene mutations of Chinese patients with polycystic kidney disease through targeted next-generation sequencing technology.

Polycystic kidney disease (PKD) is the most common hereditary kidney disease. The main mutational genes causing autosomal dominant polycystic kidney disease (ADPKD) are PKD1 and PKD2 as well as some r...

Statistical considerations for rare diseases drug development.

One of the most challenges for rare disease clinical trials is probably the availability of a small patient population. It is then a great concern on how to conduct clinical trials with a small number...

Health information behaviour of rare disease patients: seeking, finding and sharing health information.

Rare disease patients find independent health information seeking necessary due to the general lack of knowledge on rare diseases and inadequate information provision by health care professionals.

A UK reported case of Graves' disease with thyroid hemiagenesis.

We present a rare case of a 31-year-old patient with Graves' disease with agenesis of the left thyroid lobe. The patient was managed with a right hemithyroidectomy and isthmusectomy as definitively tr...

Clinical Trials [4238 Associated Clinical Trials listed on BioPortfolio]

Multi-center Clinical Study on the Diagnosis and Treatment Management of Rare Neurological Disease in Children

The incidence of rare diseases is extremely low, the disease is numerous, the symptoms are serious, and the detection technology is complicated. Countries have different definitions of rar...

Registration Study for Rare Type of Pulmonary Hypertension

Our knowledge on the rare type of pulmonary hypertension which can not be explained by left heart disease, respiratory disease or congenital heart disease is very limited. Investigators ai...

Multi-level Communications and Access Strategies to Improve the Food Environment

The overarching goal of B'More Healthy Retail Rewards (BHRR) is to develop, implement, and evaluate a pilot multi-level communications and pricing intervention to improve access to and con...

French National Registry of Rare Peritoneal Surface Malignancies

Despite advances in the management of and changes in clinical practice, little is known about the epidemiology, patterns of care and outcomes of rare peritoneal surface malignancies patien...

Genomic Analysis of Peritoneal Mesothelioma by CGH Arrays

Peritoneal mesothelioma is a rare disease representing one third of all mesothelioma and nothing is known about molecular characteristics of this disease. As main cancers, genetic heteroge...

Companies [1686 Associated Companies listed on BioPortfolio]

Rare Disease Communications®

Rare Disease Communications® is a health care communications and media company focused on the rare disease community and dedicated to raising awareness of rare diseases and orp...

Rare Disease Communications

Rare Disease Communications® is a healthcare communications and media company focused on the rare disease community and dedicated to raising awareness of rare diseases and orph...

Children's Rare Disease Network

The Children's Rare Disease Network (CDRN) is a non-profit advocacy group committed to connecting, educating and empowering the rare disease community, providing a link between families impacted by ra...

Openly Rare with Paul Kidwell

Openly Rare with Paul Kidwell is a monthly podcast covering all aspects of rare diseases and will feature conversations with newsmakers and leaders from the world of biomedical an...

Recordati Rare Diseases Canada Inc.

Recordati Rare Diseases Canada Inc. is a biopharmaceutical company committed to providing often overlooked orphan therapies to underserved rare disease communities in Canada. Reco...

More Information about "Rare Disease Communications" on BioPortfolio

We have published hundreds of Rare Disease Communications news stories on BioPortfolio along with dozens of Rare Disease Communications Clinical Trials and PubMed Articles about Rare Disease Communications for you to read. In addition to the medical data, news and clinical trials, BioPortfolio also has a large collection of Rare Disease Communications Companies in our database. You can also find out about relevant Rare Disease Communications Drugs and Medications on this site too.

Quick Search

Relevant Topic

Healthcare
Health care (or healthcare) is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in humans. Health care is delivered by practitioners in medicine, chiropractic, dentistry, nursing, pharmacy, a...


Corporate Database Quicklinks



Searches Linking to this Company Record