Thursday, February 28, 2013

Thankful Thursday: Rare

Thank you to the Obama administration for recognition of the importance of this day... not just February 28, another day on the calendar, but one I hope you all will take note of. 
Hydranencephaly, as many of you all know, is a rare neuorological condition which affects approximately one in 10,000 births worldwide and only one in 250,000 in the US alone. Such a rare condition seems far less rare as families come together to offer support, guidance, information, and inspiration through the efforts of our foundation and involved families. 

Today our friends at EORORDIS (Rare Disease Europe) along with many other rare disease alliances across the globe recognize these rare conditions, many of which go undiagnosed and are untreatable. Research and awareness are essential in bettering the lives of those affected:

February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.
On and around this day hundreds of patient organisations from more than 71 countries and regions worldwide, the biggest group of participants in all six years of the recognition, are planning awareness-raising activities converging around the slogan 

“Rare Disorders without Borders”

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!

Rare Disorders without Borders from the official website:

Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation.

Patients and their families who feel isolated because of the rareness of their diseases should know that there are more than 6000 rare diseases affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating. They affect people in similar ways. Reaching out across borders can help them find common solutions and remind them they are not alone.

Advances in rare disease research have more chances of succeeding if sought after internationally when hundreds of teams of researchers from different countries work together to understand the disease and find therapies. Financial resources for research will go further if pooled with other funding from various countries: This is the idea behind the International Rare Disease Research Consortium (IRDiRC) which has already rallied the support of 10 countries.

Policies in healthcare and social services which have proven beneficial to people living with rare diseases in one country should be standardised and replicated internationally. This is the idea behind the European Union’s call for countries to develop National Plans for Rare Diseases in all Member States by the end of 2013.This initiative is intended to improve coordination of rare disease policies at the national level – following a common road map – and then to harmonise them across Europe.

The theme for 2013 reminds us tackling rare diseases with an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.

"There are over one hundred million people
living with a rare disease around the world.
Take down borders, for rare disorders. 
Show your solidarity today!”

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