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Just in time for the Boston marathon, PNH patient and paired partner with the Genzyme team Amanda Foisy discusses her experience with a rare disease and what running means to her.


I have PNH, PNH doesn't have me
runningforrarediseases.org
I procrastinated my way through undergrad and grad school, and so it was no surprise that the marathon is days away and I am still struggling with what I could contribute to the team’s blog. I tex...
Posted: April 19, 2014, 6:00 pm
NORD is on the road for our regional patient meetings. There will be a hypoparathyroidism meeting for patients and families on April 25th in Dallas Texas.


Hypoparathyroidism Regional Meeting 2014: Dallas — National Organization for Rare Disorders
rarediseases.org
NORD will host a regional patient meeting for patients and families affected by hypoparathyroidism on April 25, 2014 in Dallas, TX.
Posted: April 18, 2014, 7:15 pm
This is Nate and his service dog Rita. Service dogs are very special and can provide physical, mental and financial assistance. Thanks for sharing Nate and Rita with us!


Photos of Rare Disease Day US
I know you asked us to post pictures of our pets but.....'Rita' is not a pet....she is Nate's hard working Service Dog! And he loves her and she loves him!!!
Posted: April 18, 2014, 3:28 pm
Did you know? The International Rare Disease Day campaign hit a new mark-- 84 participating countries with 410 events worldwide!

Posted: April 17, 2014, 7:08 pm
Is there someone in your life you'd like to thank? In the spirit of joining together for better care, we are sharing stories, photos, and videos of thanks on our Thank You Tumblr wall. Submit your story today! http://nord2014.tumblr.com/submit

Posted: April 17, 2014, 12:00 am
Helpful Tip: It's usually best with rare diseases to be treated at a ‘teaching hospital’ affiliated with a university rather than a smaller community hospital because teaching hospitals are more likely to have experience with rare diseases.
Posted: April 16, 2014, 7:25 pm
This coming Monday, Genzyme will run for NORD in the Boston Marathon. Here's why their dedication matters to the rare disease community.

Posted: April 16, 2014, 6:04 pm
Are you looking for a patient organization for a particular rare disease? Search our Organizational Database to find an organization specifically for people with your disease. These organizations can be tremendously helpful in many everyday ways, and they’re also a wonderful way to network with other people who have the same disease.



NORD's Patient Organizations Database
www.rarediseases.org
Posted: April 16, 2014, 1:10 pm
Are you a caregiver for a family member or friend with a rare disease? How long have you been in your caregiving role?

Posted: April 16, 2014, 12:45 am
Watch the ‘Medicine in Development for Rare Diseases’ by the Pharmaceutical Research and Manufacturers of America (PhRMA). PhRMA represents the country’s leading biopharmaceutical researchers and biotechnology companies whose members are committed to finding cures and treatments for some of the most serious diseases.


Medicines in Development for Rare Diseases
www.phrma.org
Since 1983, more than 450 medicines have been approved to treat rare diseases, compared to fewer than 10 in the 1970s.
Posted: April 15, 2014, 8:45 pm