News & Events

Teen’s Unique Web-Design Fundraising Strategy Aids Companies and Nonprofits

Rare Daily, by Global Genes (Editor) Ilana Jacqueline is the Managing Editor of The RARE Daily at Global Genes. She assists the patient community… The Greenville, South Carolina native had a unique idea for how to raise funds for her favorite charities. In exchange for a $1000 donation, she would offer companies a complete website… Continue Reading »

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

The Pain Relief FoundationMarch 11, 2015 Tea Lynn Moore Pain Conditions Introduction Functional Somatic Syndromes, conditions characterized by functional disability and self reported symptoms rather than clearly demonstrable organic problems, are a common contemporary health issue [1]. Each medical subspecialty seems to have at least one somatic syndrome for patients whose symptoms cannot otherwise be… Continue Reading »

Social media awareness campaign fosters visibility and acceptance for POTS

The Pendulum, Elon University’s Student News OrganizationBy:  Leena Dahal Like any freshman, Maddy Gross began her school year in the fall filled with flurries of nervous, eager anticipation. The only difference was that her heart beat three times faster than everyone else ­— literally. While her peers were adjusting to college life and preparing for classes… Continue Reading »

Elevator Girl

By Michaela Sullivan As a teenager, all I want is to be normal. As a teenager living with Ehlers Danlos Syndrome and Scoliosis, my life is anything but normal. Have you ever heard the saying “Why fit in because you were born to stand out”? Unfortunately, it’s true. While I’d like nothing more than to… Continue Reading »

A Balancing Act

Dysautonomia DispatchMarch 2015 There’s a reason no one says that living with a chronic illness is easy: because it isn’t. Living with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, can be especially challenging at times. However, there are ways, with practice, to manage life with dysautonomia and find your own version of normal. One of the… Continue Reading »

RARE from the Front Lines : The Good, The Bad And The Ugly

FEBRUARY 28TH IS RARE DISEASE DAY. In Washington DC and all around the world events have been taking place as advocates, physicians, patients and policy makers meet to talk about Rare. Support groups are hosting events and people are sharing their stories in the hope of shining a spotlight on the many lesser-known diseases that… Continue Reading »

A Not So Normal, Normal Week

By Karen Richards Some things are just so ridiculous to imagine we cannot possibly comprehend them. My life is one of those things. I am fourteen. I would like to say I’m beautiful and smart, but that might be pushing it. People see me and they think that I am normal but that’s the thing… I am not normal at all. I have… Continue Reading »

Suggested medical work-up for those traveling to see Ehlers Danlos specialists

The following document was agreed upon by physicians who attended the 2014 TCAPP Physician Think Tank on Ehlers Danlos Syndrome (EDS) and Co-Morbid Conditions. This worksheet is only a guide for patients (and their local physicians) who are traveling to see an EDS specialist. This guide is not meant to take the place of, or to override the recommendations of one’s primary care physician. The… Continue Reading »

TCAPP Newsletter

Read about our Pediatric Pain Summer Camp, Massachusetts Legislation that May Benefit the Rare Disease Community, & TCAPP’s Successful Polar Plunge. Click here for Newsletter

The Polar Bear Plunge – Click here for video

Here is a short video of TCAPP’s 2015 Polar Plunge in Newport, RI! It was a great time for everyone who ventured out into the cold. Dr. Chopra raised over $1,000 for TCAPP! Thanks to everyone who donated to TCAPP in honor of Dr. Chopra and everyone who came to the Polar Plunge – we appreciate you.