February 28, 2009

Today is Rare Disease Day 2009

Today is Rare Disease Day.

Rare Disease Day: rarediseaseday.org/
Rare Disease Day 2009

I blogged elsewhere a couple weeks ago about how in working with the health system you do NOT want to be an outlier ( Life Outside the Bell Curve, a.k.a. The Limitations of the Evidence Base). I should have added you don't want to be interesting either. People with rare conditions are both. This often means that both they have no strong voice in developing and implementing healthcare systems and policies, and also that the typical healthcare provider isn't likely to have a strong sense of how best to help.

Rare Disease Day is designed to help promote both these concerns and find solutions. As the image above says:
- Strengthen one voice of patients
- Give hope and information to patients
- Bring stakeholders closer together
- Coordinate policy actions in different countries
- Get equity in access to care and treatment.

Here in the United States, your best connection to this initiative is through NORD.

National Organization for Rare Disorders: rarediseases.org

Rare Disease Day - NORD

So what can you do? Tell people. Now, today, tomorrow, whenever. There will be another one next year, if you miss today. Just get the word out. Here are some ways you can join in with the activities going on.

Join the Facebook group.
Rare Disease Day 2009

Set your Facebook status to tell folks.
Rare Disease Day 2009

Contribute photos to the Flickr group.
Rare Disease Day 2009

Follow them on Twitter.
Rare Disease Day 2009

Tell folks on Twitter.
Rare Disease Day 2009

Go to their YouTube channel. Subscribe, and watch some videos.
Rare Disease Day 2009

Read the book.

The Voice of 12,000 Patients: http://eurordiscarebook.eurordis.org/

Rare Disease Day 2009 Rare Disease Day 2009

Bottom line? Tell someone.

Posted by pfa at 12:47 PM | Comments (0)

February 28, 2008

Two Important Days - Anti-Bullying & Rare Diseases

February 27 and 29 are two important days to be aware of for persons with facial difference. The first advocates for the prevention of bullying and the second advocates for the awareness of the concerns of persons with rare diseases.

February 27th became noted as a date in honor of anti-bullying initiatives in Canada and has spread through the social media. There are hundreds of blog postings, a Flickr group, a Facebook group, social news reports, and more - even a YouTube video.

Christi Clark: Wear Pink: http://www.wearpink.ca/

Facebook: Events: I Will Wear Something Pink on February 27th & Take a Stand Against Bullying: http://www.facebook.com/event.php?eid=21151549152

Facebook: Groups: Wear a Pink T-shirt on February 27th and Take a Stand Against Bullying: http://www.facebook.com/group.php?gid=22281224208

Flickr: Groups: Stop Bullying: http://www.flickr.com/groups/stopbullying/

NowPublic: Today is anti-bullying day - so wear some pink and get involved: http://www.nowpublic.com/culture/today-anti-bullying-day-so-wear-some-pink-and-get-involved

February 29th is International Rare Disease Day. It was founded by EuroDis and promoted by Denise Silber in Paris. The day's events and activities focus on promoting awareness of rare diseases and the concerns and issues related to them.

"Because we constantly need to raise awareness on rare diseases among decisions makers, health professionals and the general public. Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals ... Because we need to keep fighting for rare disease patients ... "

There is still time to join the Facebook group and show your support. Think about it, will you?

Eurodis: Rare Disease Day: http://www.rarediseaseday.org/

Facebook: Group: Feb 29th is Rare Disease Day: http://www.facebook.com/group.php?gid=8392774023

Posted by pfa at 11:46 AM | Comments (0)

March 20, 2007

Slides about Let's Face It

Just another way to show you the slides I mentioned previously.

Posted by pfa at 10:31 AM | Comments (0)

March 17, 2007

Let's Face It, AboutFace USA, & SlideShare

Many thanks to Marita Inglehart for inviting us to speak as part of the Multicultural Affairs Committee series on disabilities and dentistry. The presentation slides are available on SlideShare.

Let's Face It Comes to Michigan: Lessons Learned about Web Sites for Persons with Facial Difference: http://www.slideshare.net/umhealthscienceslibraries/lets-face-it-comes-to-michigan-lessons-learned-about-web-sites-for-persons-with-facial-difference/

In SlideShare, there are other presentations about persons with facial difference and how to support them. Highlighted here are those from AboutFace USA, in particular a presentation to the UNLV School of Dentistry that includes information about clinician-patient communication with persons with facial difference.

AboutFace USA: http://www.aboutfaceusa.org/

SlideShare: AboutFace USA: http://www.slideshare.net/aboutfaceusa

SlideShare: AboutFace USA: AFUSA UNLV Presentation: http://www.slideshare.net/aboutfaceusa/afusa-unlv-presentation

Posted by pfa at 05:48 PM | Comments (0)

North American Craniofacial Family Conference

AboutFace USA and CleftAdvocate have announced the upcoming NACFC will be held on July 22 - 24, 2007. Even if you can't attend, it is worthwhile to read the description of the events and planned speakers. Highlights include:

Keynote Speaker:
Ronald P. Strauss, DMD, PhD - Only Skin Deep: Quality of Life, Stigma and Facial Appearance: A New Paradigm for Thinking about Children with Craniofacial Conditions

Guest Speaker:
Cindi Broaddus - A Random Act: An Inspiring True Story of Fighting to Survive and Choosing to Forgive

More information is available here:

cleftadvocate: NACFC 2007 On-line Registration and Information: http://www.cleftadvocate.org/nacfc.html

Posted by pfa at 01:30 PM | Comments (0)

October 24, 2006

Betsy Wilson Speaks at UM this Friday

Just a reminder that this event is this week.

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. Betsy will be speaking from noon to 1pm at an event in Room G378 of the University of Michigan School of Dentistry. The event is open to the public. Light refreshments will be served.

The UM version of the site will be at:
http://www.dent.umich.edu/faceit/

Press Release:
Craniofacial Disfigurements Web Site to be Transferred to U-M -- "Let's Face It" Leader to Speak at Dental School Oct. 27
http://www.dent.umich.edu/about/aboutschool/news/news2006/news100406.html

Event Information and Poster:
Facing Life With a Different Face -- Betsy Wilson:
http://www.dent.umich.edu/faceit/FaceItPoster.pdf

Posted by pfa at 02:27 PM | Comments (0)

October 19, 2006

First National Conference on Living with Facial Differences

AboutFace is delighted to announce the First National Conference on Living with Facial Differences.

Inspiration 2006 will be held on October 27-28, 2006, at the Wyndham Bristol Place Hotel, Toronto.

More information is available at their website:
http://www.aboutfaceinternational.org/programs/national_conference.php

Posted by pfa at 10:34 AM | Comments (0)

Introducing Let's Face It at UM

The University of Michigan is proud to announce that the Let's Face It web site is being transferred from the Let's Face It USA organization to UM this month. The Let's Face It web site provides information and resources for persons with facial differences, their friends and family, and clinicians. At the University of Michigan, we hope to enrich and expand the variety of clinical information and resources on the site.

Our Mission:
To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.

Our Vision:
To be recognized as a reputable source of information and resources that those with facial differences, those who care for them, and the general public can go to with confidence and a desire to learn.

The original "Let's Face It" web site has been at:
http://www.faceit.org/

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. The UM version of the site will be at:
http://www.dent.umich.edu/faceit/

Press Release:
Craniofacial Disfigurements Web Site to be Transferred to U-M -- "Let's Face It" Leader to Speak at Dental School Oct. 27
http://www.dent.umich.edu/about/aboutschool/news/news2006/news100406.html

Event Information and Poster:
Facing Life With a Different Face -- Betsy Wilson:
http://www.dent.umich.edu/faceit/FaceItPoster.pdf

Posted by pfa at 09:52 AM | Comments (0)