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#1

At an ever-quickening pace, biopharmaceutical companies and patient advocacy groups are banding together to hasten development of new drugs for rare diseases.

#2

Mark Baglin, Vice President of Global Marketing at Alnylam Pharmaceuticals, works in ultra ultra rare diseases, like Hereditary ATTR Amyloidosis.

#3

Jeanine O'Kane and Marie Emms, senior executives at Syneos Health, address rare disease pricing and the ties between manufacturers, payers and patient advocacy groups.

#4

Marie Emms, Rowena Kam, and Michael Pearlman of Syneos Health discuss how social media can be used by patients with rare diseases and by those who recruit for rare disease clinical trials.

#5

Health insurers have raised challenging questions about how drugs for rare diseases are defined, regulated, and priced in the U.S. market.

#6

Drug developers and regulators are expanding the use of real world evidence to design, test and review rare disease treatments.

#7

Collaboration between advocacy groups and the healthcare industry can lead to better treatments, more engaged relationships and better quality of care.

#8

Drug developers and regulators are expanding the use of real world evidence to design, test and review rare disease treatments.

#9

Catch Meg Alexander, Head, Reputation & Risk Management Practice at Syneos Health, on RARECast - a podcast focused on the intersection of rare disease with business, science, and policy.

#10

This summer, students in California Institute for Regenerative Medicine’s Bridges to Stem Cell Research and Therapy program at California State University (CSU) San Marcos had new lab partners: families impacted by rare diseases.

#11

A new unbranded disease campaign Find the Right Fit launched by Jazz Pharmaceuticals seeks to support rare disease patients with myelodysplastic syndrome (MDS) and secondary acute myeloid leukemia (sAML) as they move throughout their diagnosis and treatment journey.

#12

Huntington’s disease is a rare, fatal neurodegenerative disease that is desperate for treatment options and doctors are doing their best to help improve the quality of life for the more than 30,000 people living with the disease and over 200,000 at-risk of inheriting it.

#13

Efforts to bring treatments to market for the approximately 7,000 rare diseases affecting more than 350 million people globally have been stepped up in recent years.

#14

The Institute for Clinical and Economic Review (ICER) recently published the white paper “The Next Generation of Rare Disease Drug Policy: Ensuring Both Innovation and Affordability.”

#15

The growing appeal of orphan drugs to manufacturers isn’t a groundbreaking story, but a new report identifies some head-spinning facts behind the focal shift from blockbuster to rare-disease drugs.

#16

For some 30 million Americans living with one of 7,000 known rare diseases, there has never been a more hopeful era.

#17

Representatives from small and big pharma, and those fighting both rare diseases and more prevalent ones, came together in San Diego recently for WIB-Southern California: The Growing Importance of Patient Advocacy in BioPharma.

#18

There’s no doubt the “pricing crisis,” has taken a heavy toll on the reputation of the biopharmaceutical industry.

#19

Market Landscape for Rare Diseases

#20

Pfizer brings both fun and learning to the hemophilia community through a Minecraft-based experience

#21

Live from eyeforpharma Philadelphia 2019— A dozen fresh soundbites from a panel of pharma executives exploring the gap between strategy and execution.

#22

In this collaborative piece, Meg Alexander, Managing Director of our Reputation & Risk Management practice and Susan Suponcic, Managing Director of our Pricing and Market Access practice, highlight misalignments in perception that derail access to orphan drugs.

#23

The World Orphan Drug Congress Europe (WODC) looked back on the remarkable achievements of the last 20 years of the General Pharmaceutical Legislation (GPL) in Europe.

#24

As a social media millennial at Syneos Health™, connecting the world of TikTok—one of the hottest social media channels today—and healthcare was a challenge I couldn’t pass up.

#25

Since the fall of 2015, and against a backdrop of harsh media attention to pharmaceutical pricing, patient advocacy groups that form partnerships with pharma companies have received negative coverage in The New York Times, USA Today and other publications.

#26

Pfizer and Novartis have been independently developing therapies for nonalcoholic steatohepatitis (NASH), and they’re now set to join forces to yield a combination therapy for the fatty liver disease linked closely with metabolic disorders.

#27

We’ve pulled together for you all our best thinking from our Reputation & Risk Management team - comprised of healthcare communicators, policy-shapers and crisis response specialists.

#28

That figure represents the total cost to cover the 2,200 (approx.) patients with a rare form of blindness with Spark Therapeutics new one-time gene therapy, Luxturna.

#29

Missed the most recent analysis conducted by ICER?

#30

Regenerative medicine is growing fast, and was a hot topic at this year’s SXSW event in Austin, TX.

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