Dear AmyloidosisSupportNetwork Family and Friends,

Celebrating Awareness Months for specific rare diseases are a great way of procuring attention to our cause. By discussing our condition and helping to educate others, our active participation creates a great impact.

So, we are sharing these suggestions anew on how to help spread the word.

ON SOCIAL MEDIA AND …

Finding a new doctor can be difficult, and very scary.  Being prepared can make the whole experience much easier on you, and on the new doctor.  Remember that the doctor works for YOU, and if you are uncomfortable, then you are free to keep searching for someone else.  The best doctors are ones that spend time with you, listen to your concerns and take them seriously, and be willing to work with you to find the treatment that is best for you.  If you find…

Dear Amyloidosis Family and Friends,

Our prayers go to those affected by the Boston Marathon bombing. We also hope that none of our members were directly affected by it in any way.

Those who have listened to Scott’s interview on Thoughbot would have realized by now how important your personal participation and activity in our site is. This is a site built for you: it is yours.

It kind of reminds me of that story of a…

After being featured on a number of publications, Ben's Friends is again the subject of a live podcast with co-founder Scott Orn on Thoughtbot. Here are a few excerpts:

"A lot of people (members) don't know what Ben's Friends is. They just know... their community... and it's really awesome!...…

Coping with a rare condition stretches our resiliency and, with a little help from friends, triumph through adversity.

The story of Ben's Friends founder Ben Munoz proves just that. Recovering from a stroke brought about by a cerebral arterioveous malfomation in 2006, Ben started a rare disease community to connect with others and before you know it, that network has grown to 34…

Check this out: Eli Lilly, one of the largest pharmaceutical companies in the world, featured Ben's Friends in their Clinical Open Innovations Portal. The Indiana-based company highlighted BF's work in…

Dear Amyloidosis Family and Friends,

I have been going through the many responses to the discussion “Lessons in Life” posted in all our 34 communities. The responses I got inspire me so much!

One comment sums it all in a word: Perspective.

Isn’t it true? Having illnesses, though certainly not enjoyable,…

I am sorry to say that dad died peacefully in his home Monday night.  We spoke to him just minutes before his death.  He was sitting in his swing overlooking the lake; exercising his newly replaced knee.  He was having an ordinary day.  I invited him over for dinner.  He said he would come.  My mom left the house to bring over some things she had bought for her grandkids.  I called to ask dad a question; mom picked up the phone and she let me know that I needed to come quick.  Attempts were…

Amyloidosis is one of the diseases linked to nephrotic syndrome--a set of conditions characterized by proteinuria or high levels of protein in the urine, causing protein levels to drop in the blood and cholesterol levels in disarray.

Is nephrosis one of your symptoms?

Sign up for the Nephrotic Syndrome Support group launched by Ben's Friends through…

Dear Friends and Family of Amyloidosis Support,

Recently I started a discussion on  What’s the best thing you’ve done for yourself lately?

I am interested. Really. Not a ‘curious’ sense of interest. Everyone has a peculiar sense of feeling good which is unique from everyone else. My question is based on a sincere interest in knowing if anyone…

Celebrate the love of family, friends, and good health.

Whether you celebrate Valentine's Day on your own or with someone else, take steps to be a healthy valentine. Challenge yourself to be active, healthy, and smoke-free.

• Treat yourself and loved ones to a heart-healthy meal that includes…

Dear Friends and Family of Amyloidosis,

Let me start by thanking you for your wonderful participation in our 2012 campaign and to warmly welcome you to our next adventure!

Some of you may be asking: “What is Ben’s Friends? How is it related to this community?”

Ben’s Friends is a team of dedicated professionals, mostly patients and affected by rare diseases too, who are tasked with building, keeping up, and growing your community and 30+…

I just learned that, as a member of this community, I can give a maximum $1 donation to Ben's Friends and make a big difference for others! http://www.indiegogo.com/BensFriends2013

In just five years, Bensfriends.org  has built one of the largest patient support organizations in the world. We run 33 discreet support communities that help 25,000+ people…

I found an interesting article about the four types of Amyloidosis. I hope this might be of help.

The Four Types of Amyloidosis…

I am doing a charity run in May to help raise funds for research into treatments for Amyloidosis at UCL and hope to get Amyloidosis mentioned on the BBC TV coverage by running in an eye-catching outfit so I can get interviewed...

...any help in publicising this would be very much appreciated!! I had a quick go at a youtube video to try to help out - let me know what you think?…

Dear Friends and Family of Amyloidosis Support,

Rare disease awareness is on a steep rise as never before! This early, we want to tell everyone that key members of our team will be attending several events spread throughout 2013 in different countries to give talks on relevant topics around rare diseases. Truly something to look forward to!

Part of what they will be talking about is the …

as for the heart.swollen tongue can be a sign..same with swolen feet ankles..my sense of taste completely changed..used to love ketchup, red wine etc,spaghetti..chemo is really dropping the mutated protein levels..some tastes comming back..eating better..my trouble is loose bowels (stempicel? for nausia helping same with emzine and hormone for bowels

Sanford Research’s Coordinator for Rare Diseases (CoRDS) featured Ben’s Friends Patient Communities (BensFriends) in its latest Twitter chat, a regular event which brings together rare disease patient groups and other key stakeholders to discuss topics around #raredisease.

Follow this link to view the press release and to download the full transcript on PDF format.…