Thursday, January 31, 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 porphyria
  • sharing information on the latest research activities and clinical advances
  • discussing 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 event for the cause of porphyria patients around the world.

Some scholarship funding will be available, so if you are interested in attending and /or needing a small scholarship, please contact the APF toll free: 1.866.APF.3635

For details, please see:

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

Wednesday, January 23, 2013

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!


Monday, January 21, 2013

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 skills to help achieve the educational programs of the APF. For example, donate one of your paintings, sculpture, computer expertise, business acumen etc. for our fall raffle or to help APF.

*HOLD a community race, car wash or other fund raising activity.

*HONOR your loved one with a gift to the APF for a birthday, anniversary, holiday or memorial tribute.

*WRITE a letter to friends and family asking them to consider making a donation to the APF;

*ASK your local newspaper or community newsletter to include a story about you and porphyria or just do an article on porphyria. Every article helps increase awareness. 

*LEARN how to be an advocate in your daily life. There are many opportunities to share knowledge of porphyria.

*BEFRIEND your physicians and they will share their new found knowledge of the disease. 

*HOST a patient meeting and share your experiences and your successes in advancing porphyria awareness. 

The APF can help you accomplish these goals by providing materials: Porphyria Brochures, A Porphyria Live DVD,
Fact sheets, Powerpoint Presentations, Information for Grand Rounds, Ideas to set up Medical Seminars and Health Fairs, Information to gain press coverage, Press Releases for local newspapers and television and many more.

Tuesday, January 15, 2013

Top 10 Habits of Happy People





Be Grateful
As 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 Yourself
Don’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 TV
A 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-Gooder
And bring out the good in other people by helping out! The benefits of volunteering are endless: Make friends, learn new skills, expand your resume, teach values to your kids, strengthen your sense of community… What else? Tell us in the comments!
Find a new way to volunteer this year near you: Think about what interests you and how you can help, then browse through our top issues to find charities making a difference.
Make New Friends
Meet other do-gooders. Meeting new friends while volunteering can expand your social or professional network. What a great way to join the APF FB groups and share your stories and experience.  And of course, it’s fun!
Don’t wait for the right moment
There’s no time like the present to jump in and volunteer. Your local nonprofits always need your help! Find a charity near you.
Donate What you Can
Studies show that giving to others makes us happy. Can’t make the financial commitment? Give your time or expertise.  How can you support the APF as an individual or a family? Or donate goods that you no longer use: clothes, food, school supplies, etc.
Keep an Open Mind
Try something new this year! Trying new things makes us happy.
Be Kind
It turns out that being kind is good for you. In fact, some people even think that the survival of a species depends on it!
Keep Learning
Want to learn a new skill, or teach your kids one, but don’t know where to start? Browse opportunities with local arts nonprofits. Need career help? Browse job training nonprofits near you.  Remember Research is the Key!


Thursday, January 10, 2013

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, Vampire Weekend, Season 2 , Episode 6

    *Doc Martin, Series 4, Episode 2*CSI Las Vegas, Justice Served Season 1 Episode 21*CSI Las Angeles, Once Bitten , Twice Damned Season 2 Episode ?

    *ABC News Specials, Medical Mysteries Series, episode 2**ABC News Desiree Lyon interview *ABC Prime Time CEP segment

    *Mystery Diagnosis, The Sickest Patient in the Hospital and Terrifying Tremors, Season 5*Mystery Diagnosis, The Boy Who Kept Swelling, Season 6 episode 6

    *Mystery ER, Seeping through the cracks/Purple Haze, Season 1: episode 3

    *Secret History: Purple Secret in Search of Royal Madness, Season 6: episode 6

    *Montel Williams: Porphyria with Lauren Warren*Montel Williams, Rare Diseases, Leppert Family

    *Travel Channel, Documentary Romania

    *Learning Channel Dec 09 Porphyria, another myth in the making.

    *Fox News Desiree Lyon interview*Fox News Vampires , A Medical Myth Nov 2009*Fox News King George, Madness or Arsenic July 2005

    *BBC news Desiree Lyon

    *Sanjay Gupta CEP patient, Kasey Knauf CEP

    *Anderson Cooper 360 CEP 

    *CNN documentary on CEP patient, Kasey Knauf*CNN interview Desiree Lyon (CNN HERO)

    *Dr. Oz EPP patient, Craig Leppert

    *National Geographic; Feb 2010 Six Ways to Stop A Vampire

    *Court TV

    _________________________________________________________________________________Parade Magazine, Desiree Lyon Howe stroyParade Magazine, Porphyria, Rare Disease FeatureNew York Time Magazine-Sunday, Perplexing Pain : Porphria Article_________________________________________________________________________________*The Madness of King George (1994) & (2005) Movie

    NBC Evening News , Thurs. May 31 185Dr. Bruce Spielgaman WBZ Aug 25 2005Jenkins, Mark Collins. Vampire forensics: Uncovering the origins of an enduring legend. Washington: National Geographic, 2010. 303pp. Porphyria Featured on Television 

    *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, Let them eat cake, Season 5: Episode 10*House, Carrot or Stick , Season 7, Episot 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, Vampire Weekend, Season 2 , Episode 6

    *Doc Martin, Series 4, Episode 2*CSI Las Vegas, Justice Served Season 1 Episode 21*CSI Las Angeles, Once Bitten , Twice Damned Season 2 Episode ?

    *ABC News Specials, Medical Mysteries Series, episode 2**ABC News Desiree Lyon interview *ABC Prime Time CEP segment

    *Mystery Diagnosis, The Sickest Patient in the Hospital and Terrifying Tremors, Season 5*Mystery Diagnosis, The Boy Who Kept Swelling, Season 6 episode 6

    *Mystery ER, Seeping through the cracks/Purple Haze, Season 1: episode 3

    *Secret History: Purple Secret in Search of Royal Madness, Season 6: episode 6

    *Montel Williams: Porphyria with Lauren Warren*Montel Williams, Rare Diseases, Leppert Family

    *Travel Channel, Documentary Romania

    *Learning Channel Dec 09 Porphyria, another myth in the making.

    *Fox News Desiree Lyon interview*Fox News Vampires , A Medical Myth Nov 2009*Fox News King George, Madness or Arsenic July 2005

    *BBC news Desiree Lyon

    *Sanjay Gupta CEP patient, Kasey Knauf CEP

    *Anderson Cooper 360 CEP 

    *CNN documentary on CEP patient, Kasey Knauf*CNN interview Desiree Lyon (CNN HERO)

    *Dr. Oz EPP patient, Craig Leppert

    *National Geographic; Feb 2010 Six Ways to Stop A Vampire

    *Court TV

    *Midsommer Murders: Season 13, Episode 5 Masterclass_________________________________________________________________________________Parade Magazine, Desiree Lyon Howe stroyParade Magazine, Porphyria, Rare Disease FeatureNew York Time Magazine-Sunday, Perplexing Pain : Porphria Article_________________________________________________________________________________*The Madness of King George (1994) & (2005) Movie

    NBC Evening News , Thurs. May 31 185Dr. Bruce Spielgaman WBZ Aug 25 2005Jenkins, Mark Collins. Vampire forensics: Uncovering the origins of an enduring legend. Washington: National Geographic, 2010. 303pp.

Friday, January 4, 2013

Thought for the day.


A good reminder to one's self.
If you agree with this statement please hit like or agree or feel free to share your thoughts!

Important EPP Survey URGENT ASAP!!!

Important EPP Survey Dear EPP Community, As you know, the diagnosis of EPP is often delayed for many years. Researchers at the Icah...