Editor’s Voice: February – rare disease awareness and top ten e-patients

Hannah Blake


On pharmaphorum this month, most of our published content has been around the subjects of rare diseases and patients, in the run up to today which is Rare Disease Day. This article includes some of our article highlights, plus the top ten e-patients as nominated by our audience.

If we can say so ourselves, what a fantastic month it’s been on pharmaphorum. It’s been great to see so many patients, patient organisations, rare disease organisations and pharma companies get involved, whether through our Tweet chat at the beginning of February or through contributing a thought leadership article or nominating their favourite e-patient or sharing their personal stories for our rare disease patient and caregiver video – I’ll go into more detail about these later, but I’m sure you’ll agree it has been one very busy month!

Firstly, today is Rare Disease Day, and that’s where our disease focus idea came from. Organised every year by EURORDIS, the aim of the day is to raise awareness for patients and caregivers around the world. This year’s theme is “rare disorders without borders”, reminding patients that they are not alone in tackling their disease.


“It’s been great to see so many patients, patient organisations, rare disease organisations and pharma companies get involved…”


To coordinate with the different awareness activities arranged in the lead-up to Rare Disease Day, I thought I’d share with you some of my personal highlights from this month:

• Melissa Hogan, mother of a patient with a rare disease, explored the possibility of pharma developing cures for rare diseases.

Genetic Alliance UK gave us an overview of the rare disease situation in the UK

• Terri Schleuder shared her story about how the introduction of the Orphan Drug Act 1983 changed her son’s life, and many other lives, for the better.

• The Planning Shop’s Caroline Mathie asked, “Orphan drug repositioning – to or from a more common disease?

• While the AKU Society’s Oliver Timmis questioned: “Can we market non-commercially viable orphan drugs?

• In “Being diagnosed with cryoglobulinemia”, Diane Dike shared her personal experience and discussed the importance of online patient communities when it comes to dealing with a diagnosis.

Also, we’d like to give a big thanks to our sponsors this month, Siren Interactive, who also contributed an interesting five-article series looking at some of the challenges within rare diseases:

How gene therapy is transforming medicine

The future of social media and pharma: collaboration

Patient registries and why they are essential for rare diseases

Rare disease pricing – is it sustainable?

Rare disease research: the current and future state


“…we were extremely pleased to see such a large response, especially through our poll on Facebook.”


Results of our top ten e-patients

Drum roll please! After announcing the launch of our first-ever top ten e-patients nominations back in December 2012, we were extremely pleased to see such a large response, especially through our poll on Facebook.

So now, we shall reveal who our top ten e-patients were:

1. Melissa Hogan

@savingcase http://www.savingcase.com/

2. Marianne Vennitti

@mvennitti http://laughingnana.blogspot.co.uk/

3. Kerri Morrone Sparling

@sixuntilme http://www.sixuntilme.com/

4. Tiffany Peterson

@TiffanyAndLupus http://www.tiffanyandlupus.com/

5. Dave deBronkart

@epatientdave http://epatientdave.com/

6. Katherine K Leon

@katherinekleon http://kakleon.wordpress.com/

7. Alan Thomas

@alanROYGBIV http://www.ataxiasouthwales.org.uk/

8. Katrina Moody

@Kats_Cafe http://katscafe.org/

9. Rebecca Alves

@savebecka http://www.facebook.com/SaveBecka

10. Alyssa Zeigler

@alyzee17 http://alyzee17.blogspot.co.uk/

All of the e-patients nominated are passionate about raising further awareness for patients around the world. You may recognise quite a few of these names from their active social media channels and / or blogs. Plus, a few have written articles or taken part in our ‘patient perspectives’ series and most took part in our recent rare disease Twitter chat. Keep an eye out for our Twitter chat roundup, written by our Managing Editor Rebecca Aris, who did a great job organising the discussion.

Also, don’t miss our “Rare disease perspectives from patients and caregivers” video – it’s truly inspiring.

Other content highlights

While our main focus has been on rare diseases and patients this month, we have also published some other interesting content, that’s been well received by our audience. Here are some of my personal highlights:

• Clinical Current’s article, “The new leaders of healthcare”, discussed the introduction of the Health and Social Care Act 2012, which is set to transform the healthcare landscape from April 2013.

• Melissa Russell discussed the challenges in supplying drugs to remote areas of the world and how pharma can best overcome these issues.

• And finally, Daniel Ghinn’s latest “Pharma gets social” article explored the Facebook social media strategies for the top 15 pharma companies.


“Also, don’t miss our “Rare disease perspectives from patients and caregivers” video – it’s truly inspiring.”


March 2013 and beyond

Coming up next on pharmaphorum is our discipline focus on R&amp,D Innovation and a disease focus on dermatology, so look out for some interesting pieces in these two areas, along with some general pieces on healthcare and pharma issues as usual.

Also, join with me by wishing good luck to pharmaphorum’s CEO and founder, Paul Tunnah, for his panel discussion at the Economist event this afternoon! Look out for some social media activity throughout today on our Twitter account @pharmaphorum (or the #pharmasummit) and also an event write-up in the next few weeks.

That’s all for now, so until next time, enjoy…


About the author:

Hannah joined pharmaphorum in early 2012, after graduating with a degree in Magazine Journalism &amp, Feature Writing in 2011, and leads our news coverage, in addition to liaising with new and existing feature authors. With over three years’ experience working within the journalism industry alongside university, Hannah has written for a number of different print and online publications, within the women’s lifestyle, travel and celebrity sectors. Now focussed on the pharma sector with her role at pharmaphorum, Hannah is embracing the challenges of working within a fast growing media organisation in this rapidly changing industry sector.

For any queries or contribution suggestions, please contact her here or via Twitter @Hannah_Blake2.

How can we raise further awareness for patients and rare disease patients around the world?