Rare Disease Day ® 2015 – Theme of the Year: Care

Posted on February 27, 2015 by MaryO

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Theme: Living with a Rare Disease – Slogan: Day-by-day, hand-in-hand

2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are Living with a Rare Disease.

Over 6000 different rare diseases have been identified to date, directly affecting the daily life of more than 30 million people in Europe alone. The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways.

How to find a diagnosis?

How to access treatments?

How to find appropriate expertise?

How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?

How to operate special equipment?

How to administer treatments?

How to identify and access social services?

How to manage the economic burden of living with a rare disease?

How to ensure the well-being of the entire family and balance priorities?

Patient organisations become a crucial source of information, experience and resources. Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services we all need. Patients, families and organisations are pivotal to the momentum of creating solutions for the daily challenges of living with a rare disease in solidarity with all stakeholders – caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.

Internationally, it is essential to send a strong message of solidarity to the countless rare disease patients and families throughout the entire world. Together, we can transform the individual experience of patients and relatives around the world into collective actions, support, advocacy and community building.

via Rare Disease Day ® 2015 – Theme of the Year: Care.

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

Cushing’s Email Newsletters?

Posted on February 19, 2015 by MaryO

newsletters

 

Cushing’s folks –  would you be interested in occasional email newsletters returning?

If five or more people are interested, we’ll try this again.  I think it’s been a couple years since the last email newsletters were sent out.

If you are interested, please sign up here.  If the form takes too long to send, please email me.

NO SPAM will be sent.

Thanks!

Filed under: adrenal, adrenal crisis, Cushing's, Meetings and Conferences, pituitary, Round-up | Leave a comment »

Official Rare Disease Day 2015 Video

Posted on February 16, 2015 by MaryO

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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

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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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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.

 

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