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Showing posts from February, 2013

Join Rare Connect, Why? & What It Is!

What is Rare Connect?  Once you sign up it's free and you become a  member.  You are Connecting with Patients of Rare disease Globally!  There is Information from many of the Porphyria Centers worldwide, we ask questions, we talk, we read and join in excellent conversations!  So if you see any familiar faces say "HI" and become friends and if you or know someone with another disease join that group to.  We are excited for all of you to join in this process.  All groups are monitored and all have good guidelines to follow and it's so simple to use.  If you have any problems or signing up please contact and she will be happy to assist you.

 "Research is the Key to Your Cure"
SIGN INJOIN Community:
Select your community                Alkaptonuria (AKU)                           Alstrom Syndrome                           Alternating Hemiplegia (AHC)                           Amyloidosis                           Atypical Hemolytic Uremic S…

Rare Disease Day February 28th 2013

Rare Disease Day February 28th 2013

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.  In 2013, it will be observed on February 28th. 
Anyone can be involved in Rare Disease Day. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way!
What is a Rare Disease?
In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical…

Why Is Getting A Rare Disease Diagnosis So Difficult?

Why Is Getting A Rare Disease Diagnosis So Difficult? It can be a long, frustrating process ·From:NIH Getting a rare disease diagnosis can be a long, frustrating process Photo © Getty Images/Photodisc Getting a correct diagnosis is often a major challenge for someone who has a rare disease. Many people are unable to get a diagnosis, are misdiagnosed or have one diagnosis then another. There are many reasons why getting a rare disease diagnosis can be a long, frustrating experience. Your disease is rare It may seem obvious, but the very fact that a disease is rare makes it very difficult to be recognized. You may see many doctors before you finally find one who knows something about what you have. Some diseases are so rare that only a geneticist (genetics specialist) would be able to identify them aftergenetic testingis done. ·Is It A Rare Disease? Your symptoms are 'nonspecific' Some rare diseases have symptoms, such as weakness, anemia, pain, vision problems, dizziness or coughing. Man…

Protect our future

Protect our future

The Protect Our Future campaign was established to attract and train the next generation of doctors and specialists in the field of Porphyria. Over the next decade, we will lose ninety percent of our valued Porphyria experts. These men and women have led Porphyria research, testing and treatment for the past 30 years. Without financial support, we run the risk of losing knowledge of the disease, quality testing, diagnosis, and treatment, and ultimately a cure.
When we originally made the Protect Our Future appeal, the APF received a higher volume of payments for annual memberships. We appreciate your contributions, which help fund patient and physician educational programs.
Protect Our Future is a separate campaign and need. We are seeking additional donations for the specific purpose of locating and training new porphyria specialists.
You and I are pulled in so many directions for our donations, such as churches, police leagues and schools. But rarely will we be presen…

Would you like to Tell your story about Porphyria?

HI there all! 

 I hope that everyone is doing well at this time.  
I am looking for those who might be willing to share there story about Porphyria and what struggles they have and how they have been able to get back to better health.  We all need help and ideas so please take a moment to think about this invite and if you would like to share your thoughts and stories please email me @

Self-esteem: 4 steps to feel better about yourself!

Self-esteem: 4 steps to feel better about yourself
I know that having Porphyria can be very difficult at times but when I read this over it really made me think about how I view things and how I can change them.  Once you put them into practice I know you will feel better about yourself but your life to.  Enjoy:)
If you have low self-esteem, harness the power of your own thoughts and beliefs to change how you feel about yourself. Start with these four steps to a healthier self-esteem. By Mayo Clinic staff Low self-esteem can negatively affect virtually every facet of your life, including your relationships, your job and your health. But you can take steps to boost your self-esteem, even if you've been harboring a poor opinion of yourself since childhood. Start with these four steps. Step 1: Identify troubling conditions or situations Think about the conditions or situations that seem to deflate your self-esteem. Common triggers might include: ·A business presentation ·A crisis at work o…