2018 Ben’s Friends Community Network Update

The following new communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben’s Friends Patient communities and may be of interest to our existing members:

LivingwithChronicPelvicPain Community – Chronic pelvic pain (CPP) is a disabling disease that causes distress as the quality of life of CPP patients is vastly diminished. In addition, CPP is a public health crisis and is a burden on healthcare expenditure. In the United States, the annual costs for the diagnosis and treatment of CPP are 2.8 billion US . Moreover, to the indirect cost resulting from the absence from work and CPP associated family problems add 550 million US more making the economic burden more than 3.4 billion US $ (Mathias et al., 1996). Yet, the diagnosis of CPP is usually complicated as there are no gold standard guidelines that clearly define this syndrome. Although we have a limited understanding of its etiology, CPP has been found to be correlated with central sensitization, painful bladder syndrome, irritable bowel syndrome, endometriosis and adhesions. As such, in the evaluation of patients, it is imperative to take a comprehensive patient history. Performing physical examinations and ultrasound imaging is of particular value to elucidate the etiology of pain. As CPP patients are at risk for psychological disorders, psychological assessments are critical to diagnose associated psychological disorders and to take these into account in planning a treatment plan for patients. By such evaluation techniques, medical professionals can provide better diagnostic service and patient care to people with CPP. 

LivingWithDysautonomia Community – Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Included conditions are **Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Multiple System Atrophy (MSA)*

LivingWithEpidermolysisBullosa Community – Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.*

LivingWithIdiopathicPulmonaryFibrosis Community – Idiopathic pulmonary fibrosis (IPF) is a type of lung disease that results in scarring (fibrosis) of the lungs for an unknown reason. Over time, the scarring gets worse and it becomes hard to take in a deep breath and the lungs cannot take in enough oxygen. **IPF is a form of interstitial lung disease, primarily involving the interstitium (the tissue and space around the air sacs of the lungs), and not directly affecting the airways or blood vessels. There are many other kinds of interstitial lung disease that can also cause inflammation and/or fibrosis, and these are treated differently. It is important to work with your doctor to determine if you have IPF or another form of interstitial lung disease.

LivingWithNephrotic Syndrome Community – Nephrotic syndrome may occur when the filtering units of the kidney are damaged. This damage allows protein normally kept in the plasma to leak into the urine in large amounts, which reduces the amount of protein in your blood. Since the protein in the blood helps keep fluid in the bloodstream, some of this fluid leaks out of the bloodstream into your tissues, causing swelling, called edema. The swelling may be most noticeable in your legs after you have been standing and around your eyes when you first get up in the morning. Eventually, the swelling in your legs may be there all the time, and it may also occur in other parts of your body. You may notice that your urine foams more than usual because of the amount of protein in it.

LivingWithRaynauds Community – Raynaud’s (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm). Women are more likely than men to have Raynaud’s disease, also known as Raynaud or Raynaud’s phenomenon or syndrome. It appears to be more common in people who live in colder climates. Treatment of Raynaud’s disease depends on its severity and whether you have other health conditions.

LivingWithSarcoidosis Community – Sarcoidosis is the growth of tiny collections of inflammatory cells (granulomas) in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin. Doctors believe sarcoidosis results from the body’s immune system responding to an unknown substance, most likely something inhaled from the air. There is no cure for sarcoidosis, but most people do very well with little or only modest treatment. In half of cases, sarcoidosis goes away on its own. In a few cases, however, sarcoidosis may last for years and may cause organ damage.

LivingwithSleepDisorders Community – Sleep disorders number around 88, but most sleep specialists spend much of their time treating the top five: insomnia, sleep apnea, narcolepsy, restless legs syndrome, and periodic limb movements. About one-third of the population has some form of insomnia at any given time, and 10% of that group has chronic insomnia. According to the National Sleep Foundation, a large majority (75%) of Americans say they’ve had at least one symptom of a sleep problem a few nights a week or more within the past year. Ben’s Friends sponsors a separate community for narcolepsy at LivingWithNarcolepsy.org

One of the new sites we are especially excited about is rebuild of LivingWithRareDisease Community This site now contains links to all our communities as well as an RSS feed of the latest activity in all our community. With the framework of this site, we have housed, a number of instructional videos and slide shows on how to use the Ben’s Friends Communities. These can be accessed from you regular community.

We also have live tech support to help with your computer problems. The support chat is monitored throughout the day by computer geeks who can help with computer issues only. If they are not online, you can leave a message and one of them will get back to you soon.

There are some exciting things happening now and through out 2019 that will continue to make Ben’s Friends the best online support resource for Rare Disease. We’ll keep you posted.

Thanks for a great year and Thank you for your Participation. If you have been away for a while, PLEASE check in and give us an update. Not a day goes by that one of our current members asks about you.

Ben Munoz Joins Antidote Rare Disease Conversation

Antidote, a digital health company who aims to accelerate the development of breakthroughs treatments, making medical research accessible to all, held a roundtable discussion named, “How are Rare Diseases Treated?: An Advocate Conversation”. Ben Munoz, Co-Founder, Ben’s Friends joined the conversation as they delve into the role of medical research in the rare disease space. Read more from Antidote’s post.

Ben’s Friends Newsletter November 2016

 

  

MESSAGE FROM BEN

Hi, everyone, I hope this message finds you and your loved ones well.  

Ben’s Friends Patient Communities was founded in 2007; I had just suffered a rare form of brain hemorrhage (AVM) and was looking for online support during surgery and recovery.  I couldn’t find the support I was looking for, so my friend Scott and I started the first Ben’s Friends Patient Community, a support community for AVM survivors.  Since then, Ben’s Friends has created dozens of patient communities and helped connect hundreds of thousands of rare disease patients just like you.  What makes us different is that we are 100% non-profit, created by patients, for patients.  Thank you for being a part of the largest and most caring network of rare disease patient communities on the internet!

–Ben Munoz

Founder, Ben’s Friends / ben@bensfriends.org

Ben’s Friends’ Mission

To ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, have a safe and supportive place to connect with others like them.

YOU DID IT!  YOU HELPED BUILD US A NEW ONLINE HOME!

Our patient communities used to run on software was originally built almost 10 years ago!  It took over a year of research and hard work but we finally moved our communities over to a newer and more modern software platform. 

The tens of thousands of people who visit our 30+ patient communities every month now have a modern-looking site that is also much more mobile-friendly.  Search is better, discussions are more organized, and the sites are much faster to load.  

You DID it!  Our new online home is 100% thanks to you for volunteering or donating to help rebuild our online home.  Extra special thanks goes out to the Mod Support team for their countless hours of behind-the-scenes work and coordination.

What do you think?  Email me at ben@bensfriends.org.

Having a rare disease or chronic condition can be quite isolating.  Does this sound familiar? Your friends and family have never heard of your condition.  Your boss or coworkers cannot “see” anything wrong with you, so they dismiss the severity of your condition.  Your healthcare provider gives you a diagnosis, but can’t tell you what to expect.  The stress and fear can be overwhelming and nobody seems to understand what you and your family are going through.   

Patients and their caregivers may feel like they are alone until they find groups such as Ben’s Friends where they can connect with others who have been on their journey.  This is a place to gather information from those who have walked your path, and to share guidance with those who are newly diagnosed and their families.  

Sharing what you know about your condition is vital to other patients and families, but it is also important for those who do research on your condition to hear your voice.  Pharmaceutical companies, device manufacturers, university researchers, and those focused on the economic and social impacts of living with rare and chronic conditions all want to hear about you to understand the way your condition influences your decisions and impacts your day-to-day experiences.

Rare Patient Voice was created to provide patients with and their caregivers with an opportunity to voice their opinions through surveys and interviews to improve medical products and services.  Founded in 2013, Rare Patient Voice has over 100 different panels representing over 30,000 patients and caregivers in the US and Canada.  The company’s vision is to be the catalyst for patients in all disease categories to share their experiences confidentially with those who can make a difference for those living with rare and chronic conditions.

Rare Patient Voice meets patients and caregivers at events such as conferences, walks, and educational forums, and invites them to join research panels.  Participants receive a gift card for joining the panel, and when they participate in a study, they receive $100 for an hour of their time.  Over the past three years, Rare Patient Voice has paid patients and caregivers over $1 million dollars for sharing their opinions.  Participants benefit from the process on several levels, as one participant noted, “The money is nice, but getting our voices heard is amazing.”

If you would like to share your experience, please join Rare Patient Voice at www.rarepatientvoice.com/sign-up.

This is a sponsored post. CLICK HERE to learn more about sponsored posts.

Just the Numbers

Communities: 34

Friends: 30,000+

AVM FUNDRAISER A HUGE SUCCESS

Last month, AVMSurvivors.org launched a Indiegogo fundraiser to help upgrade their community.  The community raised over $2,000, smashing the goal of $500.  Amazing stuff.

If you would like to launch a fundraiser for your community, we can take care of the details.  Just email Todd Hall at todd@bensfriends.org.

How You Can Help

If your community has made your life a little better and you would like to give back, here are some ways you can help.  Email volunteer@bensfriends.org to get started.

Become a Community Greeter

  • Say hello to new members and be available to answer any questions they may have. (0-1 hour per week)

Become a Community Moderator

  • Organize discussions and help make sure the community warm and friendly for everyone. (2-3 hours per week)

Write a Newsletter

  • Write content for our quarterly newsletter or for one of our monthly newsletters. (1-2 hours per week)

Manage Social Media

  • Post inspirational content to thousands of followers on our Twitter and FB pages. (1-2 hours per week)

Email volunteer@bensfriends.org if you have some spare time and would like to give back to patients.

Contact Us

www.BensFriends.org

info@bensfriends.org

 

BioBlast Matches Up To $5,000 In Donations To Help Build A New Home For Ben’s Friends

BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities to a new online platform. BioBlast is a clinical-stage global pharmaceutical company focused on the research and development of treatments for people living with rare diseases.

“We are focused on improving the lives of people suffering with symptoms of rare genetic diseases, like OPMD and SCA3,” stated Paul Firuta, Chief Commercial Officer, BioBlast, “and are excited about the opportunity to support Ben’s Friends in creating a new online homes for the OPMD and SCA3 communities.”

Ben’s Friends is hoping to complete the migration of the OPMD and SCA3 communities early 2016.

CMX Hub Features Ben’s Friends

Ben’s Friends co-founder Ben Munoz shared in CMX Hub how to build trust from patients with rare diseases.

According to Munoz, making members feel welcomed is key. The welcome is the most important piece of the community membership cycle. When a new member joins, they are warmly greeted by lots of veteran members who trusted the community and so new members feel the warmth and friendliness. Read more from this article.

Is the Price of Generic Drugs in the US Going Up?

A 1000% price hike in the cost of generic drugs? Can that be true? According to this recent article from the AARP Public Policy Institute (PPI), 27% of the generic drugs prescribed last year went up in cost. Follow this link for the full story:

The Cost of Generic Drugs Spike

http://www.aarp.org/health/drugs-supplements/info-2015/prices-spike-for-generic-drugs.html

How Can I Help?

Thanks for your interest in making a difference. On behalf of anyone living with a rare disease, we thank you.

Ben’s Friends is a 501(c)(3) non-profit, and your donations is tax-deductible.

1. Help a Friend or Relative: if you know someone with a rare disease, forward them our web site or ask them to contact us at info@bensfriends.org

2. Connect Us: if you have a connection you think would be interested in helping us or partner with us (PR consultants, reporters, medical professionals, hospitals) please let us know at info@bensfriends.org.

3. Help Spread the Word: help us spread the word about BensFriends.org or a specific patient community. Follow us on Twitter at (@bensfriends). If you have marketing or PR expertise, we would love to hear your ideas about ways to spread the word and help more people. Contact us at  info@bensfriends.org.

4. Help Us with PR: our biggest need is to get this story in front of reporters and bloggers. If you have a blog, blog about us. If you know a blogger, send them a link to our web site.

5. Help Us Increase Our Google Rank: most people find us via Google. If you operate a web site, linking to BensFriends.org helps make our patient communities easier to find for the patients who need us.

6. Ben’s Friends is run by an army of volunteers and relies on donations to fund operations. Please click here to make a contribution.

7. If you shop on Amazon, please sign up for their Smile program that gives money back to Non Profits (at no cost to you). Go to Smile.Amazon.com, choose “Bens Friends” (Houston) as your charity of choice, then whenever you shop on Amazon make sure to go to Smile.Amazon.com and help thousands of rare disease patients at BensFriends.org.www.youtube.com

 

Member’s Talk

“I’m excited to be representing such a great organization like Ben’s Friends. Ben’s Friends has helped so many, and we’d love to know how we’ve helped you, too. We’ve seen the numbers grow and grow. Since our first year, our membership has increased from 23 to 50,946! In just the last 5 years our membership has increased an amazing 620%.

We look forward to helping many others, and we can do so with your help and support.”

NEW Executive Director of Ben’s Friends Gretchen Flatau

Continue reading “Member’s Talk”

Mark Krueger and Associates,Inc Blog Featured Ben’s Friends

Mark Krueger & Associates, Inc., one of the leading consultant to pharmaceutical, biotech, device and diagnostic companies features Ben’s Friends. John Stamler, Ben’s Friends Board Member, contributes on MK&A page as guest blogger. Stamler wrote that Ben’s Friends patient communities ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.