Rare Disease Need Not be a Lonely Place for Patients

By: John Stamler

Each year, the last day of February is recognized as “Rare Disease Day” – a day when those working in, and those living with, rare disease come together to try to improve the lives of patients.

As a person with a rare disease and a survivor of another condition, I know that the search for support can be much more frustrating and scary than for those with a more common condition such as diabetes or cancer.  There is much less access to patient support, with fewer fellow patients from whom to learn and with whom to share. Ben’s Friends hopes to change that for the nearly 300 million globally or 10% of the population that lives with one of over 7,000 diseases considered rare.

Ben’s Friends is a non-profit that was established when our founder, Ben Munoz suffered a brain hemorrhage and found that he had no one in his situation to talk to until a friend of a friend put him in contact with a fellow survivor.  Wanting to connect with others who lived with a similar condition to share emotions and information, Ben developed a website and mailing list for those that suffered from AVM brain hemorrhage.  To learn more about Ben and his journey, watch the short video.

Since that first group was born, Ben’s Friends has built more than 36 patient support communities with more than 100,000 monthly unique visitors and growing rapidly.  We do this mostly through the creation of online support groups which new members find via searches on Google, Facebook and Twitter (@BensFriends) as well as via word of mouth and news media such as Forbes, The Houston Chronicle and The Harvard Business Review.

Each community we help establish is unique and we treat it as such.  To help get communities off the ground and ensure appropriate conversations in our closed communities, we utilize moderators who either have the condition or are touched by it in some way. Before new moderators are given the somewhat daunting task of starting a community from the ground up, they undergo thorough training. Our head moderator teaches about best practices and our over 100 experienced moderators share their great ideas on our dedicated moderator only support community.

Our mission is to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

There are clear benefits to people being able to connect with others like them earlier in their patient journey.  Through support groups, patients are able to find out things such as what questions to ask at their next medical appointment, who the specialist closest to them may be, stay in a positive frame of mind and even perhaps see what the future may hold for them.  For those who are further along in their journey, benefits may include helping others who are at the start of the journey.

At Ben’s Friends, for those afflicted with a rare disease, and those that love them we strive to let them:

    • Know that you are not alone.  One of the greatest support tools is connecting with others who can understand your situation.  We have found that no matter what the statistics say about how rare a disease is, patients around the world are looking for an emotional connection with others who are in the same situation.  There is also truth to the saying “power in numbers” in rare disease.  Even a small, but organized, group can accomplish so much more than a group of individuals.
    • Connect online.  Make the power of the internet your friend.  Patients today have so much more information and power at their fingertips than those of even 10 or 20 years ago.  Find out if there are support communities already out there.  If so, join them, even if they are based far away from where you live – your commonalities will bring you together.
    • Be empowered.  If you don’t see a patient community out there for you, start one.  Connect with us at info@bensfriends.org and or on our website www.BensFriends.org and we can help every step of the way.

Ben’s Friends believes that everyone has a role to play in combating rare disease and supporting those who have a rare disease.  We will work with and engage with any patient, medical professional, business or third-party group who believes in our mission, but our focus will always be on supporting the patients and patient communities we serve.

At Ben’s Friends, we are never standing still.  We are continually exploring and searching for new ways of raising awareness of rare disease and providing support to patients.  We are confident in seeing a future where patients with rare disease have reason to be optimistic with more treatment options and increased support mechanisms.

February 28th, 2015 may be “Rare Disease Day” but for many, there is a lifetime of rare disease.  By banding together as connected patient communities, we can accomplish much more than we could as individuals.   We can influence government policy, payors and encourage new research.  But most of all we can help and support each other.

About the Author:

John Stamler

John Stamler is a Board Member at Ben’s Friends.  He can be reached through Ben’s Friends emailwebsite, Facebook or Twitter.

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