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Jacey Mukka, the NYA's Video Director Extraordinaire, found a very cool video on YouTube discovering something new::
Video - World Rare Disease Day is being held Feb. 28, 2009.
A staggering 60 million people worldwide are impacted by rare diseases of different types -- together they make rare disease not really rare. Most families know someone with a "rare disease" or are a caregiver of someone with a rare disease. If you love children and others who suffer from rare disease, please help spread our message to the world -- World Rare Disease Day is being held Feb. 28, 2009. Join the fight to raise awareness and educate people on genes and how they impact health!
Who knew there was a Rare Disease Day?? I googled it and it appears to be a new advocacy effort to educate people around the world.
World Rare Disease Day
Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support.Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.
The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives.
Other main objectives of Rare Disease Day are to:
- Raise awareness on rare diseases
- Strengthen one voice of patients
- Give hope and information to patients
- Bring stakeholders closer together
- Coordinate policy actions in different countries
- Inspire continued growth of the awareness of rare diseases
- Get equity in access to care and treatment
Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.
There's not much going on in the US this year, except the below, but this is new........and it's up to people affected by a rare disease, such as HD to spread the word!!!
USA - National Organization for Rare Disorders - NORD Video
This video was created for the 25th anniversary in 2008 of the U.S. Orphan Drug Act. NORD and its Rare Disease Day Partners are very happy to join hands with EURORDIS, the European National Alliances, and others around the world in focusing attention on rare diseases as a public health issue. We look forward to helping make Rare Disease Day an annual global event.
Who can take part?
Anyone who wants to - everyone’s invited!
Anyone who wants to - everyone’s invited!
Rare Disease is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level. The more participants, the more impact for the Day, and the more we’ll be able to do for patients.
If you are a patient or an organisation representing patients with rare diseases, tell your story here:
http://www.rarediseaseday.org/yourstory where you can upload a video or share pictures.
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