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Showing posts from January, 2013

International Meeting of Porphyria Patients

International Meeting of Porphyria Patients


The International Porphyria Patient Day, organized by the Swiss Society for Porphyria and the German EPP Patient Group, will be held on Saturday, May 18th, 2013 in Lucerne, Switzerland.

The primary objectives of the Patient Day:networking between individual patients, their organizations and the scientific experts in the field of porphyriasharing information on the latest research activities and clinical advancesdiscussing international collaborations between patient organizations and planning for an international umbrella organization to more effectively protect patients' well-being and promote their interests

The Swiss Society for Porphyria and the German EPP Patient Group would like to encourage representatives from the various international patient associations and individual porphyria patients to attend the Patient Day.We hope to see many of you there: numerous participants will contribute to making this day an enriching and valuable ev…

Alberta Rare Blood Disorders Education Day

Alberta Rare Blood Disorders Education Day

This will be a rare opportunity to bring together Canadians withporphyria, their family members, medical professionals and researchers. Please join them at this exciting conference!

The Alberta Porphyria Society afternoon break out session will include a presentation by Dr. Brian Gilfix of McGill University, Montreal, Quebec. Dr. Gilfix had served on the Advisory Board of the Canadian Association for Porphyria. You can read his article, Lab Investigation of the Porphyrias on the Alberta Porphyria Society website.




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

National Porphyria Awareness Week April 14-20, 2013 is about YOU!

National Porphyria Awareness Week April 14-20, 2013 is about YOU!
The challenge of living with porphyria starts with how little is known about it among friends, family and the medical community. You are the way this group of people can be reached. During National Porphyria Aware-ness Week April 14-20, 2013 (NPAW), YOU have the opportunity to enhance porphyria awareness in your sphere of influence. Here are some suggestions for ways that you can help:

*SHARE knowledge about porphyria at your doctor’s offices and local hospitals. You might suggest that they host a seminar or grand rounds on porphyria; ask if there is a local meeting where you can hand out materials. 
*ASSIST at medical conventions or health fairs to educate laypersons and physicians on porphyria.

*TELL your story to local media. Television, newspapers, community magazines are looking for human interest stories about people who have encountered a major illness and have undertaken the challenge. 

*VOLUNTEER your talents or ski…

Top 10 Habits of Happy People

Top 10 Habits of Happy People

Be GratefulAs 2013 begins, surround yourself with the things in your life that make you happy: friends, family, pets. Think about what you are grateful to have, rather than what you don’t have. Also, be sure to show gratitude to others; has your staff been working overtime? Studies show that showing gratitude to your employees can improve work performance.Take Time for YourselfDon’t let your hectic schedule get in the way of taking a little time for you. Take a break. What about getting your nails done, a nice dinner with someone special, read a good book or even taking a good nap. What would you do with some more ‘you’ time? Spend time with your kids, maybe volunteering?Turn off the TVA study from the University of Maryland correlates TV watching with lower levels of happiness. So turn off the tube and get out there! Take a walk in the park, read a book or try something new. If you watched one less hour of TV a day, what could you accomplish?Be a Do-Goode…

TV, Books, Shows on Porphyria Watch & Read!

TV, Books, Shows on Porphyria

From: Desiree Lyon~We were asked to repost the many tv shows that the apf was able to convince the networks to do on porphyria. Except the bad csi one. Here goes a few are missing *House, Honeymoon, Season 1: episode 22*House, Fools for Love, Season 3: episode 5 (mentions porphyria)*House, Finding Judas, Season 3: episode 9*House, Don’t ever Change, Season 4: episode 12 (mentions porphyria)*House, Guardian Angels, Season 4: episode 4 (mentions porphyria)*House, Whatever it takes, Season 4: episode 6 (mentions porphyria)*House, Itch, Season 5: Episode 7*House, Emancipation, Season 5: episode 8 (mentions porphyria)*House, Let them eat cake, Season 5: Episode 10*House, Carrot or Stick , Season 7, Episode 10
*Scrubs, My Ocardial Infarction: Season 4, Episode 13*Scrubs, Kelso’s last stand,Season7: episode 9*Scrubs, My Dumb Luck, Season 9: episode 7*Scrubs: Outta here like Vladimir: Season 8, Episode 4
*Gray’s Anatomy, Time Warp Season 6 episode 15
*Castle, Vam…