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!"

Monday, February 23, 2015

Thought for the week Please read and share

Support & Purchase APF for Awareness Week 100% goes back to APF

New APF Stuff is here gets yours today before they go! All Pictures included below

New APF Long Sleeve & Short Sleeve APF T-Shirts are here!

• Short Sleeve White/Purple Lettering
• Long Sleeve are Dark Grey w/ Purple Lettering
Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.
You can order a T-shirt and/or Porphyria Live DVD, Awareness Ribbons & Wristbands by sending an email order to

I must have name, complete address, and phone number. Also include the Quantity of T-shirts and the size for each one.
To accept payment: One of two options: 1} I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV-

2}I will accept money orders. You must have name/address/phone # on them. Your information will be kept confidential and never on file, and will be destroyed promptly after each transaction. Address will be supplied after order is received for privacy purposes.

*The APF will not take orders or calls about T-shirts*

Once I receive the order I will ship out your product.
All products will be shipped out Priority mail with tracking. Each person also will receive a receipt with T-shirts.
T-shirts come in the following sizes S, M, L XL,1xl, 2xl, 3xl they are 100% cotton, heavy not thin, and very durable. No other sizes.
The price per T-shirts is 19.00$/shirt. Long sleeve shirts are priced at 25.00$/shirt. This covers the shirt, shipping and tracking, and priority mail. International orders: I will have to consult first with the post office for shipping rates.

The price of the Porphyria Live DVD is $10.00 each. Shipping is included in the price. See for content info.
****We now are selling Porphyria Awareness Ribbons****

We have Dark Red, Dark Purple, Royal Blue, Mixed Red/Purple they each come with a pin on the back.
Each are 2.00$ each or 4/8.00$
 - Please specify what color you are wanting or I will give assortment per order. If purchasing another APF items there is no extra charge for shipping.
Don’t forget we also have the APF wristbands to match in the same colors as the ribbons. Please specify what color you are wanting or I will give assortment per order. Shipping is 6.00$ for all the wristbands.
Cost for wristbands is 2/6.00$ or 3.00$ each

100% of all funds received will go back to the APF

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

Thursday, February 19, 2015

If Finn Can Promote Porphyria Awareness, You Can Too!

If Finn Can Promote Porphyria Awareness, You Can Too!
Finnian, nicknamed Finn, can show us a thing or two about promoting porphyria awareness.  He wears his American Porphyria Foundation bandana proudly. The APF gave bandanas to all the pets, who entered the APF Pet Beauty Contest a few years ago. Finn is a 7 year old yellow lab. His mom is APF member, Kelsey Castro who says of Finn:
He is my best buddy! He is always by my side, especially when I'm not feeling well... I think he can sense it. I got him when I was 14 and in high school, and I'm now in college.  Finn has been my best friend through lots of hard times. His favorite thing to do is go on hikes at a local nature reserve by my house and curling up by our wood stove in the winter.
We also ask you to take every opportunity to spread the word about porphyria.  Your effort can be as simple as purchasing an APF T-shirt or giving out medical information to your doctors or showing the APF Porphyria Live video to your family and friends.  Every community needs to hear about porphyria, and you are the person to do that in your community. Please contact the APF for supplies 713.266.9617.

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

Sunday, February 15, 2015

World Rare Disease Day 2/19/15 Share. Be apart of this because YOU ARE RARE!

World Rare Disease Day is an annual observance to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare diseases and their families. Created by European organization EURORDISin 2008, this day is celebrated on the last day of February each year. The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place globally.
Looking for ways to get involved?
Global Genes holds a variety of awareness raising activities starting on World Rare Disease Day and continuing throughout the month of March (because RARE deserves more than a day). Please join patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts and our team to raise RARE disease awareness. Here are a few ways you can get involved! 

February/March Events for Rare Disease Awareness

•    Tweet Chat in Partnership with WEGO Health – Focusing on community events and facts & stats surrounding World Rare Disease Day. Thursday, February 19 at 2PM EST, participants can log on to Twitter and follow hashtags #RARETalk and #hachat to share ideas and win Global Genes & Wego Health swag bags, Walgreens gift cards, and more!

Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.

•    Give RARE (Online) – Give RARE, on March 3rd, is a single day for the world to GIVE to RARE disease! In partnership with
Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. Grants will be given throughout the day. Register by February 15th and your nonprofit will have a chance to win a year's worth of URS charity filings (worth $5000) from launch partners Charity ComplianceRegister your cause today!

•    '
I Love Someone RARE & Beautiful.' T-shirts in Partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular 'I love someone RARE & beautiful.' tee in celebration of World Rare Disease Day. This is a LIMITED EDITION item, so get them while they last! They can be purchased here.

•    Wear That You Care
 campaign - All across the world people participate in supporting rare disease awareness andWear That You Care by wearing the Blue Denim Genes Ribbon and their favorite pair of jeans on World Rare Disease Day. Wear That You Care campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans on a specific day and make a donation.

•    Social Media Awareness - Patients, advocates, and industry alike can grow social awareness by sharing photos, information, and events with Global Genes' 
FacebookTwitter, and Instagram. Where supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2015, #RAREadvocate, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit and upload their photo into photo frames to use as social media profile images to further help spread awareness.

  WRDD template 6 version 3 2014       WRDD template 4 2014       WRDD template 5 2014 2       WRDD template 2 denim back 2014 1 2

Additional community events are located on the Global Genes website:

            Join the movement! Advocate for the over 350 million with a RARE disease today!                    
Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

Sunday, February 8, 2015

National Porphyria Awareness Week is Coming Up!

National Porphyria Awareness Week is Coming Up!

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!

Fresh Newsletter
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.
 Please share your ideas with us.
"Remember.... Research is the key to your cure!"

Monday, February 2, 2015

The Doctor- Patient RELATIONSHIP

When facing Porphyria disease, your Doctor his/her team and the partnership formed among everyone involved are keys to a positive experience and the best chance of a good outcome.

In a patient, and family-centered care approach, your doctor provides an open and trusting atmosphere where you and your family can tell your story, share what is important to you, express your concerns and worries; learn about your diagnosis and treatment options; and work together on making decisions about your care that fit your values, life situation and goals.  It is also finding humor when possible; chatting about everyday things; celebrating successes and sharing sad times if facing difficult times.  In this relationship you feel respected and valued as a person and feel empowered to take an active role in your care and any decisions affecting you.  

If you and your loved ones, have this kind of relationship with your doctor and team, you will have a positive experience, but you might ask how this partnership with your doctor and team help your chances of getting the safest and best care to support your treatment and life goals.

Please stay tuned for helpful hints in the next blog...

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

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)?

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)? ADP is more severe than the other acute porphyrias and can present in childhoo...