Saturday, February 28, 2015

Celebrate Rare Disease Day With Us! TODAY!

Celebrate Rare Disease Day With Us!
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.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. It is the date to raise porphyria awareness!
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.
The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014. We hope many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.
On you can find information about the thousands of events happening around the world to build awareness for people living with a rare disease and their families. Promote the knowledge about porphyria in your communities!

Shadow Ride Updates
We will reserve the bed and breakfast in Pawhuska, OK for Friday, April 10 and Saturday, April 11 for The Shadow Ride. Please call us to confirm and RSVP your spot.
You can stay in nearby Bartlesville or drive on to Oklahoma City that evening in preparation for the Patient Education meeting with renowned expert, Dr. Sylvia Bottomley. We have a list of hotels and detailed map ready for you!
As you already know, the Kick Off ride will be held on April 11, 2015 on the famous Drummond and Hull ranches near Tulsa, Oklahoma. There will be fun for everyone, including games and miniature donkeys to ride for the kids, as well as The Shadow Ride, the opportunity to meet other porphyria friends, try Mary Hull's delicious Bar-B-QUE and watch a cowboy show. The following day, the APF will also hold a patient education meeting at the famed Cowboy Museum on April 12, 2015 from 2-5 pm. Dr. Sylvia Bottomley will make a presentation on the porphyrias and answer your questions.
Save the date, come casual and be prepared to have a wonderful time!
Please contact the APF at 713.266.9617 for maps and hotels, details of the ride and to RSVP. Everyone is welcome!

"Remember....Research is the key to your cure!"

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