Orphan diseases: together instead of alone

5. August 2014
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Currently there are around 17,000 rare diseases of genetic origin. Across Europe, about 30 to 35 million people are affected. They are looking not only for medical assistance but also for fellow sufferers to interact with. The platform "Ben's Friends" supports them in this.

For Ben Munoz the future was looking more than rosy. With an MBA from Stanford University in his pocket, all doors were open to the successful software developer – even those in the highly desired Silicon Valley. Then overnight the tide turned, and out of the blue Munoz suffered a stroke.

Alone out on a limb

Many tests later, doctors found out that the supposedly healthy man has from birth been suffering from a rare malformation of the blood vessels. In patients with cerebral arteriovenous malformation (AVM), arteries are directly connected to veins without capillaries being interposed. Through the uneasy combination of thin vessels with high blood flow, ruptures are more likely, and a cerebral haemorrhage is the result. For Munoz irradiations and surgical procedures followed. Beyond medical therapies the search for fellow sufferers which entailed was difficult. Scientists estimate that a mere 0.01 to 0.05 percent of all people have AVM. The motivated and optimistic man felt increasingly lonely and isolated. Even a psychiatrist was not able to help him. Other affected people with whom to interact and exchange information and experiences? Forget it! In the end Ben Munoz’s instinct as a software developer won out.

Ben finds friends

Together with his colleague Scott Orn he developed BensFriends.org: a network for people with rare diseases. Munoz quickly found fellow sufferers of AVM. Thus, the platform AVMSurvivors.org emerged as a pilot project. Encouraged by overwhelming success, it was followed by Living with Ataxia and Living with Trigeminal Neuralgia. Today, patients exchange experiences with and information on rare diseases in 36 online communities. Some of the largest groups help patients with arenoleukodystrophy, ataxia, fibromyalgia or cerebral aneurysms.

Patients are delighted

When one first clicks on, it’s clear to see that no one forum is like another. “Some groups are more centred on children, others more on survival with a disease”, says Ben Munoz. The common denominator (for those involved) is to support one another and to make recommendations on experts – for example, on designated AVM specialists in the Chicago area. The module Doctors Directory stands out here as the centrepiece. Patients are thrilled: each month visitors to Ben’sFriends access 575,000 pages. Every fourth visit is done via a mobile device – according to Munoz, by people for instance who have just gotten an incomprehensible, threatening diagnosis from the doctor and seek like-minded people. There still remains the question of how Ben’sFriends actually funds itself.

Many helpers, little money

“Does it necessarily need to be expensive to help people?” Scott Orn offers the question in the Harvard Business Review. In order to manage their network technically, programmers have calculated a sum of only 30,000 U.S. dollars per year. Recently, 21,381 U.S. dollars was accumulated on the crowdfunding site Indiegogo. Instead of programming by himself or investing in expensive servers, Munoz and Orn invest in two well-known tools: using Ning allows a community to build in modular fashion – involving small sums of funds. And Base Camp has blossomed among developers into an efficient project management tool. Ben’sFriends remains flexible with these demand-scalable, affordable solutions.

But that’s not all: more than 130 moderators represent diverse patients’ forums on a voluntary basis. They write press releases or swap information in a separate forum about their experiences. Those in this group also have the far-reaching privileges of being able to implement their own ideas in their respective community. And instead of horrendous marketing budgets, the founders put the onus on the users. So says ataxia patient John Colyer in a self-produced video on his role as moderator. Elodie Espesset in contrast gives thanks multimedially for information about soft tissue sarcomas. Again, the developers only provide a rough framework – the rest are done by the patients thmselves via a share your story page. Meanwhile, the actual target group carries its platform itself, both in performing the work as well as through donations. The influence of pharmaceutical companies, as occur at times with self-help groups, is able to be excluded.

Off to new shores

Getting back to Ben Munoz, the developer of Ben’sFriends. He has clear goals for himself and for his project. Today the former software developer visits the Baylor College of Medicine in Houston, Texas. He studies medicine in order to care for stroke patients medically as well. In parallel Munoz wants to expand his platform – over the world, in effect. His conclusion: “Healthcare professionals give patients helpful advice and have capacity to compassion, but patients in the same situation can empathise”.

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Medicine, Pharmaceutics, Studies

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1 comment:

Dhr. Marc Dooms
Dhr. Marc Dooms

There are 7000 (not 17 000) rare disorders (not necessarely diseases) mostly of genetic orogin (not all).

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