The Power of Connecting: It’s Better Than Vacation!

Have a rare disease? Have you ever been to a national patient conference?

These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in a room with a hundred others who “get it”!

Such conferences also provide information on the latest treatments and research, tricks and tips for handling both the physical and the emotional side of a tough and little understood health condition.

Conferences can help with things to say to family and friends, school and work, that will help others to understand what you are going through. They often discuss how to appeal to an insurance company or how to ask a pharmaceutical company for further patient assistance.

These conferences give you access to information before it is published in a peer reviewed journal article. And when, due to the small numbers of people diagnosed, there might not yet be scientific proof that one particular thing may help, it is still something you might learn about at a patient conference that could aid you right now.

Contact your patient association and consider making a national conference part of your plan for the coming year! Can’t afford to go? Check and see if there are any scholarships available.

See a few upcoming conferences below:

HD Conference

The 31st Annual Huntington’s Disease Society of America will be held at the Hyatt Regency Baltimore in Baltimore Maryland June 2nd – 4th, 2016. Click here for more info.



DebraThe first conference for those effected by epidermolysis bullosa hosted by Debra will take place on Sunday, July 24 – Wednesday, July 27, 2016 at the Gaylord Texan Resort and Convention Center in Grapevine, Texas. Read more here.


Scleroderma ConferenceThe Scleroderma Foundation is hosting a National Patient Education Conference in New Orleans, Louisiana July 29th-31st. Click here for more info.


PrintThe Dystonia Medical Research Foundation is holding a Dystonia Family Symposium in Chicago, Illinois at the Holiday Inn Chicago Mart Plaza River North, August 12-14th, 2016. Read more here.



The World Federation of Hemophilia is hosting an international meeting for those effected by bleeding disorders in Orlando, Florida, July 24th -28th, 2016. Click here for more info.


ALSThe University of Miami Kessenich Family ALS Center is hosting an ALS Patient Symposium in Miami, Florida on January 21st at the Marriott Miami Biscayne Bay. Click here for more info.

Share this info with someone you know with rare disease that’s looking for more support!

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