Posted in General Interest

INTERNATIONAL RARE DISEASE DAY 2012, Sixty Countries in Solidarity

TODAY MARKS THE FIFTH INTERNATIONAL ANNUAL EVENT in which hundreds of patient groups and their partners organise activities to raise awareness on rare diseases and the millions of people affected by them in the world.

Rare Disease Day was launched and is coordinated by the European Organisation for Rare Diseases – EURORDIS, a federation representing more than 500 rare disease patient organisations in forty-six countries. The campaign involves rare disease national alliances and patient groups in sixty countries in the European Union, USA, Canada, Russia, Brazil, Argentina, Australia, New Zealand, Japan, China and Taiwan, amongst others.

At the European level, Rare Disease Day will seek to draw attention to the thirty-million people affected by rare diseases in Europe today. In the words of EU Commissioner for Health, John Dalli, “With so many of our citizens affected, rare diseases are by no means a rare or marginal problem. Our first task has been to bring together the scarce resources that are currently fragmented across individual EU countries and to spark off joint action to help patients and professionals share expertise and information across borders….The European Union added value is real…In the public health agenda it is very important to ensure that enough funding is being made available for the research necessary to combat rare diseases.”

European Symposium ‘Rare Diseases a model of EU Solidarity’

On the occasion of Rare Disease Day and line with this year’s focus on Solidarity, EURORDIS is holding an event in Brussels, to highlight the achievements of European cooperation in the field of rare diseases and to call for rare diseases to be a priority in EU public health and research policy initiatives.

Ms Nessa Childers, Irish Member of the European Parliament, attending today’s symposium says, “I welcome the progress made in terms of moving rare diseases up the EU policy agenda as well as at national level with the adoption by a few countries of a national rare disease action plan. I would like to call upon those countries without a national plan to develop one by 2013 to ensure a better future for the 30 million EU citizens affected by a rare disease today.”

“The political momentum resulting from the public awareness campaign of the Rare Disease Day also serves our advocacy purposes. It is contributing to the advancement of policy to address the challenges faced by rare disease patients and their families,” adds Yann Le Cam, EURORDIS’ Chief Executive Officer.

Joining hands around the world

Participants of today’s symposium will raise and hold hands at 12h00 (GMT) to show their solidarity with rare disease patients around the world. This action will be echoed by many other patient groups in different countries. Photos will be displayed on rarediseaseday.org soon. You will find links to participating countries and territories HERE.

Event video

As part of this year’s Rare Disease Day campaign, EURORDIS has released a promotional video [above] with the in-kind support of Burson-Marsteller Brussels. The video is available in ten languages. Watch the video and find out the stories behind the patients featured on: rarediseaseday.org/solidarity. More information about Rare Disease Day, the events planned in participating countries and communication material is HERE.

Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist. While the diseases are rare, collectively they affect more than sixty-million people in Europe and the US alone. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.

The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. 80% of rare diseases have a genetic origin. 5,000–7,000 rare diseases have been identified to date, affecting thirty-million Europeans today.

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases. We are dedicated to improving the quality of life of all people living with rare diseases in Europe. Currently, EURORDIS represents 502 rare disease organisations in forty-six countries (of which 24 are EU Member States), covering more than 4,000 rare diseases. More information link HERE. 

Video and narrative courtesy of rarediseaseday.org

Author:

The focus of "The BeZine," a publication of The Bardo Group Beguines, is on sacred space (common ground) as it is expressed through the arts. Our work covers a range of topics: spirituality, life, death, personal experience, culture, current events, history, art, and photography and film. We share work here that is representative of universal human values however differently they might be expressed in our varied religions and cultures. We feel that our art and our Internet-facilitated social connection offer a means to see one another in our simple humanity, as brothers and sisters, and not as “other.” This is a space where we hope you’ll delight in learning how much you have in common with “other” peoples. We hope that your visits here will help you to love (respect) not fear. For more see our Info/Mission Statement Page.

2 thoughts on “INTERNATIONAL RARE DISEASE DAY 2012, Sixty Countries in Solidarity

  1. I have just been diagnosed with one, within the last month. I have sought help everywhere for over 1 1/2 yrs, and have finally found it at the Hospital for Special Surgery in New York City. But it still leaves me a long way to go to re-establishing some semblance of my life as I used to know it. I’m most interested in anything you can tell me about this organization. Not only is suffering from a rare disease painful, life altering, but it is also very isolating. Connecting with others in this lonely position could be quite helpful, it seems to me. Thank you. Lynne Henry

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    1. Lynne, I’m sorry to read that you are going through such an unfortunate experience. I don’t know anymore about this organization than what you read here. If you go to their site (the links are embedded in the post), you can get some more info and perhaps a link to an organization here in the states.

      I know just what you mean about isolation. If you read my bio, you’ll see one how I’ve managed to cope. Also this blog was started to – among other things – help people work through such issues because they’re what a lot of us who write here are dealing with. You might explore the posts – especially those in the “Perspectives on Cancer” series. You can just type that title in the blog space for search to find the series.

      Additionally, if you can find or start a support group, you will find that most helpful. The three key writers on this blog (me, Rob, and Ann) became friends through just such a support group at our local meditation center.

      Thank you for asking for information. I hope this helps a bit.

      In metta,
      Jamie

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