Official Rare Disease Day 2015 Video

Posted on February 16, 2015 by MaryO

world-rare-disease-2015

Bring People Living with a Rare Disease out of the Shadows and into the Spotlight:

Watch and Share the Official Rare Disease Day 2015 Video!

Following the Rare Disease Day theme Living with a Rare Disease, the 2015 video poignantly recognises the millions of families, friends and carers whose daily lives are impacted by rare diseases.

A big round of applause goes out to the many individuals involved in the creation of the video. Special thanks to video participants Rita, Pietro and Beatrice who are each living with a rare disease, as well as their family members who accompanied them to the filming of the video. Thanks also to UNIAMO, the Italian national rare disease alliance, for making the video production possible and to director Carlo Hintermann, animators Lulu Cancrini and Marco Varriale and all of their team for their in-kind contribution of the creation and production of the video.

The cooperation between all those involved in this year’s video is symbolic of the unity and solidarity that families, professionals, policy makers, researchers and industry are demonstrating by living day-by-day, hand-in-hand with rare disease patients. Get involved today!

Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2015 video and show the world how to live in solidarity day-by-day, hand-in-hand.

The video has been translated in 20 languages:

English – français – deutsch – español – italiano – português – čeština – dansk – العربية – magyar –suomalainen – român – polski – Türk – slovaški – 中国的 – Croatian – Ukrainian – Bulgarian – Dutch

 

Filed under: Cushing's, Meetings and Conferences, pituitary, Rare Diseases, Video | Tagged: , | Leave a comment »

World RARE Disease Day is only two weeks away!

Posted on February 16, 2015 by MaryO

world-rare-disease-2015

World Rare Disease Day is an annual observance to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare diseases and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place globally.

Looking for ways to get involved?

Global Genes™ holds a variety of awareness raising activities starting on World Rare Disease Day and continuing throughout the month of March (because RARE deserves more than a day). Please join patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts and our team to raise RARE disease awareness. Here are a few ways you can get involved!

February/March Events for Rare Disease Awareness
•    Tweet Chat in Partnership with WEGO Health – Focusing on community events and facts & stats surrounding World Rare Disease Day. Thursday, February 19 at 2PM EST, participants can log on to Twitter and follow hashtags #RARETalk and #hachat to share ideas and win Global Genes & Wego Health swag bags, Walgreens gift cards, and more!

•    Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.

•    Give RARE (Online) – Give RARE, on March 3rd, is a single day for the world to GIVE to RARE disease! In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. Grants will be given throughout the day. Register by February 15th and your nonprofit will have a chance to win a year’s worth of URS charity filings (worth $5000) from launch partners Charity Compliance. Register your cause today!

•    ‘I Love Someone RARE & Beautiful.’ T-shirts in Partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular ‘I love someone RARE & beautiful.‘ tee in celebration of World Rare Disease Day. This is a LIMITED EDITION item, so get them while they last! They can be purchased here.

•    Wear That You Care™ campaign – All across the world people participate in supporting rare disease awareness and Wear That You Care by wearing the Blue Denim Genes Ribbon™ and their favorite pair of jeans on World Rare Disease Day. Wear That You Care campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans on a specific day and make a donation.

•    Social Media Awareness – Patients, advocates, and industry alike can grow social awareness by sharing photos, information, and events with Global Genes’ Facebook, Twitter, and Instagram. Where supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2015, #RAREadvocate, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.
WRDD template 6 version 3 2014       WRDD template 4 2014       WRDD template 5 2014 2       WRDD template 2 denim back 2014 1 2

 

Additional community events are located on the Global Genes website: 
http://globalgenes.org/2015-world-rare-disease-day-community-events/
Join the movement! Advocate for the over 350 million with a RARE disease today!      

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Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

 

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Helpful Doctors are Returning!

Posted on February 13, 2015 by MaryO

harvey-surgery

We’ve done this in the past and I’d like to do it again.

Our earlier database was hacked and I didn’t feel it was worth rebuilding because so much of the info became outdated.

If you are happy with your team of doctors and feel like you have gotten good care please list them, their specialty, where they are located and anything else you’d like to say.

If you don’t want to list them here, you may use the form at http://www.cushings-help.com/forms/doctor.htm

I’m making a continually updating database so you can watch it unfold here: https://www.obvibase.com/p/dbz5EouPMSME

The Non-US doctors will be listed here: https://www.obvibase.com/p/opDSfNQ13ZHX

I can tell it’s going to be a wide page so you’ll have to scroll across the bottom. As more entries (besides my test one!) are added, you can sort by state, country, etc.

Thank you in advance! A good doctor can change a life…but not every good doctor is good for every patient.

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Rare Disease Day, 2015

Posted on February 13, 2015 by MaryO

rare-disease-day-2015

 

On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, and other NIH Institutes and Centers; the Food and Drug Administration’s (FDA) Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH will be held in the Masur Auditorium (Clinical Center, Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.

Rare Disease Day at NIH is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees. We will have talks from academic and government scientists, industry representatives, and the lay community.

In addition to the various scheduled talks (see agenda), posters and exhibits from many groups relevant to the rare diseases research community will be displayed. In association with Global Genes, we again encourage all attendees to wear their favorite pair of jeans.

The Rare Disease Day 2015 event will also be webcast and Clinical Center tours will be available for in-person attendees.

Register Here.

 

Filed under: adrenal, Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , , | Leave a comment »

Murphy’s Laws for Cushing’s Disease*

Posted on February 13, 2015 by MaryO

Another great post – with a perfect picture 🙂

attot's avatara tale of two tumors

1.  If you have 28 new symptoms, 27 of them will be vague.

2.  If there are 18 diseases consistent with your vague symptoms, you will be tested for 17 of them.

3.  If you rule out the first 17 diseases, no one will test you for the 18th one (Cushing’s) as it is too rare.

4.  If you think you have Cushing’s and are overweight, you will be told you don’t have Cushing’s – you just need to eat better and exercise more.  If you think you have Cushing’s and are thin, you will be told you don’t have Cushing’s because Cushing’s patient are overweight.

5. If you do get tested for Cushing’s, the test will come back negative.  Twice.

6.  When your tests for Cushing’s finally come back positive, you will be told you don’t have Cushing’s but you are definitely stressed out.

7.  If you have a pituitary tumor and…

View original post 142 more words

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