Rare Disease Day and My Day

It was a normal and very quiet day yesterday. I spent a couple of hours with mom before the rehab class. She is doing well and still has no pain from the surgery. I had my 5th bone scan before joining the very packed class. I was in bed at 7:00 last night. I just am not feeling that I am getting enough sleep. It is not good to plan a nap for later in the day after just awaking. My yoga hell class is this morning and I am rather looking forward to it. Afterwards, I need to get my toe nails painted for an event on the weekend. I am hauling out the Calvin Klein little black dress again as Natalie and I are going to a gala/fundraiser on Saturday night for her private children's choir. She needs to attend and her husband would rather lose a limb. I am his stand-in. This afternoon will be the planned nap before a shower, dinner and orchestra rehearsal. A busy day, after all. 

February 28, 2013 is Rare Disease Day - "a rare day to put rare diseases in the spotlight."

This year marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.  The 2013 theme and slogan is:  "Rare Disorders Without Borders."

On and around this day hundreds of patient organisations from more than 60 countries and regions worldwide 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.

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!"

For more information about Rare Disease Day 2013, see http://www.rarediseaseday.org/