Rare Disease Day February 29, 2016
Today February 29, 2016 is Rare Disease Day in the United States
Thank You Rare Disease Organization for making this day happen 🙂
The Rare Disease Organization states on their website that Rare Disease Day takes place on the last day of February each year.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Until I was stricken with a Rare Disease I had no idea of the daily struggles of rare disease patients. Sadly, I have experienced the medical journey with diseases not well documented, studied and with little treatment plans. NORD provides a wonderful service to rare disease patients and their families who feel overwhelmed, isolated, frustrated and confused.
NORD The National Organization For Rare Diseases offers valuable information for rare disease patients on this webpage.
The NORD webpage includes:
- NORD’s Rare Disease Database provides information about rare diseases in non-technical language for patients and their families.
- Clinical Trials Information is provided about current clinical trials with links to the study descriptions on ClinicalTrials.gov and a selection of the rare disease trials on NORD’s websitePatient Registries Read about NORD’s disease-specific patient registries. These registries will allow patients around the world to share relevant data, connect with researchers and support data collection in order to provide natural history information to help medical researchers better understand how diseases develop and progress over time.
- ADDITIONAL Resources and FAQs NORD has compiled a list of resources that can help individuals with questions related to financial, insurance, legal, and other disability support services.
With Many Thanks, NORD for all the support and comfort you bring to people that suffer from rare diseases.