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Showing posts from September, 2012

A Story About Aletta Longari & VP..

Some see what they lost; I see what I gained. Like a typical youngster, I rolled my eyes when my mom gave me 'that look' and say; "Jy moet youself laat toets my kind! Van lekker lag kom lekker huil." (Translated: "You have to get yourself tested, my child! From too much laughter, comes crying.") I  grew up in a loving home, with a mother that was a retired nurse with a passion for the medical field, and a relentless urge to help people around her.My father loved teaching, literature, fishing, rugby and a Sunday braai (barbeque) with friends.I also knew he had a blood condition, that made him sick if he eats spinach, or drinks the wrong medicine; he wore gloves when driving when he was younger and my mom was very proud that she nursed him back to health. I remember him spending a lot of time sleeping, or spending time in his garage that was filled with tools, benches, a desk, books, a fridge and every other wonder to keep an inquisitive mind and restless body …

The FDA Safety and Innovation Act! What you need to Know!

                                                              The FDA Safety and Innovation Act 

...was signed this week thanks to the APF and other Rare Disease Organizations. 

This is a monumental step toward the development of safe and effective treatments for millions of Americans with rare diseases. Specific to the rare disease community, the Act provides the following:
accelerated patient access to new medical treatments
the development of Humanitarian Use Devices (medical devices for small patient populations)
accelerated development of "breakthrough therapies" -- those that show early promise
enhanced FDA consultation with rare disease medical experts
a rare pediatric disease priority review voucher incentive program
resolution of conflict-of-interest issues that kept voices of rare disease medical experts from being heard
This contains the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983. This legislation represents …

How can you show your support for the American Porphyria Foundation for such causes as "Protect the Future" or Research Programs?

How can you show your support for the American Porphyria Foundation for such causes as  "Protect the Future" or Research Programs?

Look at how people have helped show there support to the APF.  Why we need you and how you can help.  Look at these past ideas and upcoming events!  Are you ready to show your support?  We need to train good Doctors, we think of all the support and the many efforts the APF does for us how can we show our appreciation lets give back!

Just take a moment to reflect on all these important Fundraisers:

Desiree Lyons did a Pet beauty contest many joined with there pets to raise money for the APF.

Rob Saupe has walked over 100 miles on foot to raises awareness for EPP! He has raised so much awareness and had many donations come in to support his walk!

Amy Chapman enjoyed selling the wristbands that can still be bought and has sold over 400 wristbands and raised over 1300.00$ 

Please call the APF @ 866-APF-3635 if you want to raise awareness and support fundin…