The rise of patient advocacy groups

There’s more and more evidence emerging that patient groups are becoming key players in medical research and development and the quest for cures.

Just today, I was reading an update from Faster Cures about an article in the Boston Globe entitled ‘Patients take on expanded role‘. Here’s how Faster Cures summarised it:

‘Patients suffering from chronic conditions are playing an active role in health care by sharing medical information and other insights through websites, said attendees at the Massachusetts Biotechnology Council’s annual meeting. Patient advocacy groups are becoming more involved in drug development by funding research projects for new treatments and collaborating with biotech and pharmaceutical firms, said Deborah Dunsire, Millennium Pharmaceuticals’ CEO.’

The Boston Globe article points to the rise of online communities as a significant factor behind these new developments.  That’s been very much our experience too. We’ve been using Yahoo Groups and Facebook for some time for our patients to share information, and most recently we’ve been part of the Eurordis Online Communities programme, which allows patients to share information with each other.  It’s something I’d encourage all rare disease patient groups to get involved with.

The article also mentions PatientsLikeMe. Check it out – it’s an impressive website. Its stated goals is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, they’ve created a platform for collecting and sharing real world, outcome-based patient data (www.patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits.

On the R&D front, it’s clear that patient groups such as the AKU Society are at the forefront of funding medical research. Raising the funds is hard work, but without us moving the process forward, who else is going to do it?

Using social media for rare diseases

I seem to have dipped into social media years after everyone else. Last week, I finally set up a Linked In account, and invited all my contacts. Linked In is like Facebook, but for professionals. So it’s a way of keeping in touch with everyone you’ve ever worked with or been in touch with professionally. For me, it’s great, as my memory for names is like a sieve, so I can dig out people’s work profiles, find out who they know, follow them up, etc.

Linked In has a number of rare disease groups. So I immediately joined them and am now getting a steady flow of updates on the orphan drug industry, the rare disease sector, etc. Definitely a useful way of staying in touch and of promoting AKU. So if you’re not on Linked In, give it a go, and then join the rare disease groups and get involved.

If you want to join the Linked In rare disease groups, here are a few of them:

Orphan XChange: http://www.linkedin.com/groups/Orphan-XChange-3181963.

CheckOrphan: http://www.linkedin.com/groups?home=&gid=2179312.

Orphan Pharmaceuticals & Biopharmaceuticals Group: http://www.linkedin.com/groups?home=&gid=1943884.

The first group is an open one (so everyone can see the discussions, even if you’re not a member of Linked In). For the two others, you’ll need to register first.

Give it a go!

Guest blog: Online communities for rare diseases

Today we have our first guest blogger: Robert Pleticha, Online Patient Communities Coordinator at Eurordis (the European Organisation of Rare Diseases). Robert’s been working hard on a new project that was officially launched yesterday. I’m sure you’ll love it and that you’ll want your patient group to be involved. It’s called Rare Disease Communities and the website is: www.rarediseasecommunities.org.

Over to you Rob…

Rob says: ‘The main idea behind the project is to create an online social network for patients and caregivers living with rare diseases in order to enable the sharing of experiences and increase access to quality information. International patient organizations collaborate to develop these communities along with Eurordis and NORD (the US National Organization for Rare Disorders). Patient organizations play a key role in governing and communicating to the community, recruiting forum moderators, and being sources of information to patients and their families.

The website is split into three sections: What, Meet, and Learn.

• The What section features patient stories and blog style updates from patients and patient organization representatives.
• The Meet section is a forum, moderated by volunteers and offering human translation services across five languages: English, French, Spanish, Italian, and German. Since patients and families are spread thinly across the globe, it is vital to create a space where information can be shared with the best possible translation.
• The Learn section is a resource of information in the form of frequently asked questions, documents, recently publish news and scientific articles, upcoming events, and patient organization’s contact information.

The project started with a pilot community for Cryopyrin Associated Periodic Syndromes. This first community brought together patient organizations in the United States and France, allowing them to connect and discuss shared treatment issues. After testing the newly developed website and attempting to create a user-friendly experience, the project expanded to include communities for Alkaptonuria, Von Hippel Lindau disease, Atypical Hemolytic Uremic Syndrome, and Familial Mediterranean Fever.

Users interested in discussing these diseases register on the website. After registering, a user can upload their story on living with the disease through a link in their profile page. The story then automatically is added to the What section and is translated into all of the platform’s languages. Users can also participate in Forum discussions or post their own questions. If a user sees a message on the Forum that is not in their language (French, German, Italian, Spanish, or English), they request a translation. Within a few hours, the message is translated and uploaded automatically to the website. The user that requested the translation is also sent an email with the translated content.

Future plans for the Rare Disease Communites project include expanding to serve new diseases like Alternating Hemiplagia of Childhood and Epidermolysis Bullosa and the inclusion of summaries and links to free, full text scientific articles through a partnership with patientINFORM.

The project is part of the strategic partnership signed in 2009 between Eurordis and NORD. The communities are guaranteed by Eurordis and NORD with a view towards fostering international collaboration amongst patient groups and protecting the voice of patients from purely commercial interests.

The project is financed by European Commission, the French Telethon (AFM) and the French Federation of Pharmaceuticals (LEEM) and a diverse array of corporate partners who play no role in the operation of these communities.’

Nick says: I think this is a great project, and not just because AKU is a partner on it. All the research shows that rare disease patients suffer from intense isolation and crave the opportunity to speak to fellow patients and share their stories. I’m so impressed by the work of Eurordis: they live for their patient groups.

If you have any any questions on the Rare Disease Communities project, Rob says he’d be more than happy to receive your emails at: robert.pleticha@eurordis.org