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 rarediseaseday.org 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 UpdatesWe 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!"
Our APF members set a great example of different activities that increase awareness in their local communities. Let's continue the tradition! In preparation for NPAW, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your area.
NPAW is the time we ask all people with porphyria to bring awareness to your own cities. NPAW has been very successful for the past ten years. Let's make this year the greatest! The Shadow Ride event and patient meeting in Oklahoma City, OK will be the Kick Off. We will post suggestions for what you can do on our Facebook pages and in E-news. Please let us know your address or call the APF office and get involved: 866.APF.3635.
You can be involved in any way that works with your schedule, resources, and interests! Join the awareness movement in your local community! Together we can make a difference. Education and awareness are the first steps of treatment!
Our quarterly Newsletter is almost done! It contains all the latest news from the porphyria world, experiences of our members and newest announcements. The APF is able to maintain our Newsletter, physician and patient education programs and many other services because of your support. Since we do not receive government funding, we need your support and donations. We also need your new contact information if you have a new address or email.
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"Remember.... Research is the key to your cure!"