Rare disease tweet chat: how can rare diseases gain more media attention?

Rebecca Aris


Rebecca Aris highlights the recent tweet chat on the topic of rare diseases hosted by pharmaphorum.

On Friday 1st February this year, pharmaphorum hosted a tweet chat on the topic of rare diseases. Many rare disease patients came together through this social media channel to discuss topics in this space. This article details some of the responses and themes that arose.

How has social media affected rare disease patients?

The first question we asked participants was how social media has affected rare disease patients. Here are some of the responses we had to this question:-

• Information via social media is power for rare disease patients.

• Social media has provided an amazing opportunity for rare disease patients to find each other and share support.

• Social media allows patients the opportunity to engage with companies who are developing drugs for rare diseases.

• In Wilson Disease group, someone newly diagnosed from the UK posted a question and got replies from people in five countries in approximately 36 hours.

• Social media has given people with cystic fibrosis the tools to put real pressure on public healthcare systems to fund new drug.

So it seems that social media offers information, a platform to connect, support and access to global communication – instantly.

Rare disease patients and clinical trials

We asked our tweet chat participants how they found clinical trials and how they calculated the risk of participating. Here are their answers:-

• Clinical trials can be found through http://clinicaltrials.gov/

• Great resource on risks of clinical trials from http://www.nlm.nih.gov/services/ctbenefits.html

• Patients need full disclosure of clinical trial to evaluate the risk verses quality of life.

• In some cases the patient has no other alternatives for treatment.

Patients are clearly quite clued up when it comes to resources in this area. They naturally still express concern over the fact there is often no alternative treatment option, and they want to be as informed as possible.


“Rare diseases need more media attention!”


How can we raise awareness of rare diseases?

Rare diseases need more media attention! This was a message that echoed throughout the chat. Rare diseases need more media press so the public can see that this is a common problem that needs to be addressed. Some popular responses to this question from the tweet chat are below:-

• One tweet, one post at a time.

• Sharing the simple fact that collectively rare diseases are not rare. One in ten Americans lives with a rare disease.

• Need high profile media attention.

• Increased interaction between all relevant stakeholders from patients to regulators.

So how can we gain media attention in this area? The question remains and given the fact that collectively rare diseases are common it’s clearly time that this area received more attention.

How can we reduce isolation of rare disease patients?

When interviewing rare disease patients a common topic that arises is the feeling of isolation that rare disease patients experience. When questioned on how we could reduce this feeling of isolation our tweet chat participants came up with the following suggestions:-

• So many wonderful online options like @inspire @patientslikeme @wegohealth and groups like @RareConnect and @bensfriends can also help

• Check out #pcori.

• Social media, especially Facebook groups can reduce isolation of rare disease patients.

Online rare disease communities, it seems, really do make a difference in offering support and reducing isolation.


“Sharing the simple fact that collectively rare diseases are not rare. One in ten Americans lives with a rare disease.”


If you could tell pharma one thing – what would it be?

Many patients express an interest in wanting to be able to communicate more openly with pharma. We asked our tweet chat participants if they could tell pharma one thing what would it be. Some of the responses were as follows:-

• Newly diagnosed rare disease patients want pharma to extend to support groups and offer an explanation of the drug development process.

• Rare disease patients need safe, effective treatments and they want to work together with pharma.

• We want a cure, but we’ll take a treatment.

A common theme was that they wanted to work more closely with pharma and wanted more education on how pharma works and, specifically, the drug development process.

As a rare disease patient, what gives you hope for the future?

We closed the tweet chat by asking what it is that gives rare disease patients hope for the future. Here is what they said…

• Other inspiring rare disease patients / families.

• More funds being allocated for research into rare disease treatments.

• Incredible gene therapy advances.

• More venues to communicate.

• Industry interest, young generation of academic researchers.

It seems that rare disease patients are hopeful that therapeutic advances, increased communication with pharma and increased funds in this area are contributing toward the treatments and cures of the future.

We’d like to thank those who participated in the chat for sharing their thoughts with us and engaging in this lively debate.

You can view the whole conversation on Appeering here or on Storify here.


About the author:

Rebecca Aris is Managing Editor of pharmaphorum, a very fast growing online thought leadership channel for pharma, representing an audience of senior pharma execs from all over the world.

Rebecca was the first full time employee to join pharmaphorum, starting in her current role in mid-2010, and is responsible for coordinating all editorial content on the site. Prior to working at pharmaphorum she was a medical writer at a healthcare PR agency. In addition, she spent three years working as a commissioning editor on three journal titles at a biomedical publishing company. Rebecca holds a BSc (Hons) in pharmaceutical science.

For queries she can be reached through the site contact form or via Twitter @Rebecca_Aris.

Thanks to the following for participating in our tweet chat!

@AmendInfo @CaregivingCafe @SanfordCoRDS @drseisenberg @ProppSolutions @Keratomania @oli_rayner @TheMyositisAssc @cdgsindrome @AANBones @jccolyer @DeanoJW @empoweratm @notsosweets @alanROYGBIV @shefcancermafia @Rebeccacjg @Keratomania @TenderDaily @mvennitti @savingcase @teaminspire @BalancingActTV @GeneticAll_UK @Strangely_T1 @premierresearch @RareDiseases @charitybegin1 @Sarcoid_Network @ElinSilveous @Hannah_Blake2 @CarolineTPSi @KatrinaMoody @Lilly_COI @PCORI @justask @MoistureSeekers @epigiri @SBSFoundation @liftstream @ShuluPotter @katherinekleon.

How can rare diseases gain more media attention?