• [[ Whitepaper ]] Connecting With Rare Disease Patient Communities: Patient Advocates

    laureng Whitepapers April 19, 2018
  • [[Whitepaper ]] Disruptive Innovation in Rare Disease Markets

    laureng Whitepapers April 19, 2018
  • Choosing the Right Channel Strategy for Specialty Product Success

    Karina Kusova Clinical Development, Market Access, Orphan Drug Congress, Supply Chain & Manufacturing, Uncategorized, Whitepapers May 3, 2017
  • [Whitepaper] Challenging Conventional Patient Recruitment and Care Strategies for Rare Disease Studies

    Karina Kusova Clinical Development, Orphan Drug Congress, Uncategorized, Whitepapers April 10, 2017
  • [[whitepaper]] The New Reality: Maximizing Value in Rare Disease Launches

    Karina Kusova Clinical Development, Featured on App, Orphan Drug Congress, Uncategorized, Whitepapers April 6, 2017
  • What’s New in Rare Cancer Research? (Spoiler Alert: A Lot!)

    Karina Kusova Advocacy, Clinical Development, Market Access, Orphan Drug Congress, Orphan Drugs Live October 10, 2016

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Advocacy

Advocacy

Patients Support Partnerships between Advocacy Groups and Pharmaceutical Companies

In Advocacy, Featured on App, Orphan Drug Congress by Freya SmaleApril 17, 2017Leave a Comment

Survey conducted by: Rare Patient Voice A survey conducted by Rare Patient Voice of over 3,000 US patients and caregivers across several hundred diseases and …

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[[Whitepaper]] In the internet we trust? – Discerning quality rare disease information

In Advocacy, Orphan Drug Congress by Karina KusovaApril 17, 2017Leave a Comment

Diagnosed with a rare disease?  Google it.  Receive a mess of returns, or perhaps nothing. Those living with a rare condition and their families face …

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Creating Medicines with Real Value for Orphan Diseases

In Advocacy, Orphan Drug Congress, Orphan Drugs Live by Karina KusovaDecember 19, 2016Leave a Comment

We were thrilled to attend the RareVoice Awards in November 2016, where we met up with our Everylife Foundation colleagues to celebrate the amazing work …

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How to capture the patients and caregivers perspectives in rare diseases?

In Advocacy, Orphan Drug Congress, Orphan Drugs Live by Karina KusovaNovember 28, 2016Leave a Comment

How to capture the patients and caregivers perspectives in rare diseases? Why are rare diseases different? Well, because they are rare! Epidemiology and natural history are …

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Giving a voice to rare disease patients – The Hill

In Advocacy, Clinical Development, Orphan Drug Congress, Orphan Drugs Live by Karina KusovaNovember 25, 2016Leave a Comment

Giving a voice to rare disease patients – The Hill Searching through my Google Alerts and I came across a great article in The Hill …

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What does Trump mean for Rare Diseases?

In Advocacy, Clinical Development, Orphan Drug Congress, Orphan Drugs Live by Karina KusovaNovember 22, 2016Leave a Comment

During a 60 Minutes interview Sunday night with Leslie Stahl, Trump detailed plans to keep ObamaCares’ pre-existing condition provision and provide a means for covering children living with …

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How Are Patient Advocates Changing Clinical Research? We’ll Tell You!

In Advocacy, Orphan Drug Congress, Orphan Drugs Live by Karina KusovaOctober 24, 2016Leave a Comment

Patient advocacy groups are just starting to realize their enormous potential to help advance treatment of cancer and rare diseases by supporting development of new …

Advocacy, Clinical Development, Market Access, Orphan Drug Congress, Orphan Drugs Live / October 10, 2016

What’s New in Rare Cancer Research? (Spoiler Alert: A Lot!)

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