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Showing posts from February, 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 …

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 dig…

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 an…

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 withWEGO Health – Focusing on community e…

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. Educat…

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 partn…