by Lisa DeAngelis
If you or a loved one is faced with a serious illness, you can only hope that illness is one of the more common ones. Because if instead your illness falls under the category of ‘a rare disease,’ your struggle will be multiplied exponentially.
A rare disease is defined as one that affects fewer than 200,000 people in the United States. There are about 7,000 rare diseases, and an estimated 25 to 30 million Americans are living with one.
Another way of saying this is that 25 to 30 million Americans are experiencing symptoms they cannot identify, and beginning to search Google sites that are not recognized and may even be scams made to take advantage of innocent sufferers to sell them treatments that have not been approved.
Robert Britting, of Furlong, decided to do something about this critical problem.
He is the founder of DiseaseHQ.com, the only free resource of its kind in the world dedicated to people suffering from rare diseases. At this website, you are “just two clicks away from everything you need to know about your rare disease.”
Robert has extensive experience having launched in one form or another many high profile pharmaceutical and biotechnology drugs. “Several years ago, I was intimately involved in launching and re-launching two rare disease drugs and came upon the idea for DiseaseHQ.com about eight months ago. I had conducted marketing research with 120 rare disease patients, and our studies showed that 93% of the individuals interviewed had little or no knowledge about their, or as caretakers, their child’s, spouse’s, friend’s, or sibling’s condition. Even the remaining 7% didn’t know all the information necessary to diagnose, treat, and learn how to deal with a rare disease.”
Robert goes on to say, “We found it was virtually impossible for healthcare professionals to keep up with the latest diagnostic options and treatments for various rare diseases. In fact, because they are rare, it takes between four to six years to identify a condition – not an ideal set of circumstances when one’s baby is experiencing symptoms, and potentially even death. Emotions run incredibly high, and lives are totally disrupted.”
When Robert came to realize that unlike with most major diseases such as hypertension, osteoporosis, or diabetes, there is little if any information available.
He says, “Patients, caregivers, and healthcare professionals had no single place to go for information.”
Cost was another issue that had to be overcome. “Many rare disease medications are incredibly expensive. For example, one dose of a medication for ‘hereditary angioedema,’ a rare disease affecting 8,000 to 10,000 individuals in the United States, costs approximately $8,000 per injection for one medication. There may be multiple injections required over the course of one year, and for the rest of the individual’s life. Another example is ‘hemophilia’ where the cost could be between $100,000 and $250,000 per year.”
Celebrity Mark Cuban of Mark Cuban Cost Plus Drug Company heard about DiseaseHQ.com and began a collaboration with Robert.
They now carry each other’s information on their websites. They also carry virtually every other resource available in the US that can help reduce prescription costs.
Since it can be challenging to find specialists who treat these rare conditions, the website also includes links to healthcare professionals with the highest rankings based on consumer experience, as well as the most recognized organizations in the US.
Other information available concerns major healthcare foundations, pharmaceutical and biotechnology companies, and gene treatment facilities.
DiseaseHQ.com is free to patients, professionals, caregivers, and consumers, so whether you are looking for general information about your condition, a specialist to treat your condition, a place to find lower cost and even no cost medications and treatment, a clinical study or trial in which to participate, and other assistance too detailed to include here, know that this website was created to help maximize your healthcare experience.
PHOTO CAP: Robert Britting