World Rare Disease Day: Feb 29, 2016

2016 ANNUAL RARE DISEASE DAY

be a part of the experience

All are welcomed to get involved in this year's World Rare Disease Day on Monday, February 29, 2016! Join the movement! Advocate for the over 350 million with a RARE disease today! Click here to see how to get involved.

World Rare Disease Day is an annual observance to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare disease and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 9th annual World Rare Disease Day will be held on Monday, February 29, 2016. On this day, various activities take place globally.

Last year, volunteers from our community participated in this annual event by telling their story in the 'Share Your Story Through Social Media' part of this event.

There are millions of technology users who access social media everyday, this makes social media one of the best avenues to share your story and spread awareness. The new RAREToolkit: How to Promote Your Rare Disease Story Through Social Media will provide hands on tips and how-to's, from how to use some of the most popular platforms available to, how to effectively share your story through them. Check it out here.

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. Supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2016, 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.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

Raise Awareness on Rare Disease Day 2015!

Click on icon

Are you planning an awareness raising event on or around Rare Disease Day 2015?

You can now Post your Event on the official Rare Disease Day website!

We list all events via patient organisations or medical professionals on our world map and country and region pages!

Don't forget to upload photos and videos so the world can see how you contributed to the global movement! This year, there is also a new feature where you can upload your event programme.

Are you having technical difficulties? Watch the recording of our informative interactive webinar on How to use the Rare Disease Day Website in preparation for Rare Disease Day 2015 here!

Click & scroll down

Rare Disease Day is open to everyone! Individuals, patients, patient organisations, health professionals, researchers, drug developers, public health authorities - the more people involved the better! There are many ways to participate. Let's join our efforts to give hope to rare disease patients all over the world! Don’t forget you can also:

• Tell your story
• Send us your picture and Raise and Join Hands
• Like us on Facebook
• Follow us on Twitter
• Follow us on Google+

Click on icon: participation around the world. Look for your country.

Please represent MEBO around the world to raise awareness in whichever way you like with the many options offered above. We appreciate the invaluable work EURORDIS and NORD have done for all rare disease patients and organizations throughout the year. We are honored and proud to be members of these organizations.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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A EURORDIS and NORD Member Organization

Take action to Raise Awareness today, Rare Disease Day!

Please click on this link
See examples below of emails written today.
Please feel free to copy and paste excerpts to create your own.

TODAY IS THE DAY TO TAKE ACTION
AS A UNITED COMMUNITY!

As mentioned in previous posts, our international community at MEBO Research and all sufferers from around the world have been "called to arms" to prepare to join the National Organization for Rare Disorders (NORD) and Eurordis in important advocacy initiatives organized for the Rare Disease Day, today, February 29, 2012. MEBO urges sufferers to take a moment to participate in the two mass email/mail campaigns aimed at the authorities in the US and UK that could be most influential in assisting us in our quest to initiate research and find a cure.

**You may include a link to the TMAU paper written by Dr. Elizabeth Shephard for MEBO Research, http://www.meboresearch.org/Trimethylaminuria%20Paper%20by%20Dr.%20Elizabeth%20Shephard.pdf **

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED STATES:

"In solidarity with EURORDIS and NORD""

By following the easy steps in this virtual tool, you can let your elected officials know that rare diseases are important to you! NORD has provided a sample letter for you, ready-to-go, though we certainly encourage you to take an extra moment to personalize your message and make it resonate.

Once you complete this action alert, your message will be instantly and electronically sent, though you have the option to print and mail your message if you prefer. You may choose to send your message to:
- The President and Vice President of the United States
- The two Senators who represent you in the US Senate
- The Congressperson who represents you in the US House of Representatives
- Your State's Governor and Lt. Governor
- Your representatives in your state's legislature

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED KINGDOM:

This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

"In solidarity with EURORDIS and NORD"

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.meboblog.com/2011/06/raising-awareness-and-research-funding.html

UK Contacts

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Media
thismorning@itv.com


Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk


Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

USA Infectious Diseases Division Office, Northwestern University
gnoskin@northwestern.edu
Gary A. Noskin, MD Professor, Medicine, Infectious Disease Division at Northwestern University.

Please participate in Tomorrow's Events - Rare Disease Day

Two topics noted below are:

1. Karen James spearheads the MEBO Research's email campaign to UK medical community contacts to be held on February 29th, Rare Disease Day,
2. Cheryl Fields goes to Washington DC, to the Office of Rare Diseases Research, National Institutes of Health/NCATS, as a table exhibitor for MEBO Research at the NIH Clinical Center.

Wednesday 29th February is International Rare Diseases Day.

It would be good to make our voices heard on this day

Please support MEBO Research's two directors, Dr. Cheryl Fields, Community Outreach Director/US, and Karen James, Public Relations Director, in their respective programs.

Karen James, has asks our entire international community to please send an email on February 29th with the information noted below to the list of UK contacts in the medical community she mentions in her post, Message from Karen James about Rare Disease Day.

This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.meboblog.com/2011/06/raising-awareness-and-research-funding.html

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Cheryl Fields, goes to Washington DC, to the Office of Rare Diseases Research, National Institutes of Health/NCATS, as a table exhibitor for MEBO Research at the NIH Clinical Center.If you should be attending this event, please try to find the MEBO Research table where she will be featuring TMAU and other yet to be identified body malodor conditions. MEBO's table exhibit at Rare Disease Day at NIH.

As a community, we have united in the past and have made a significant impact in the medical communities in the American Psychiatric Association and with the UK
NHS Evidence – UK Database of Uncertainties about the Effects of Treatments (DUETs). Let's keep up the momentum and join forces with all other organizations on this special day.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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A EURORDIS and NORD Member Organization

MEBO's table exhibit at Rare Disease Day at NIH

We are most grateful to Cheryl Fields for her very hard work in contacting many resources in preparation for the Rare Disease Day events that are to be held in Washington DC on February 29th (in only 5 days). Cheryl will be setting up and operating a table for MEBO Research in this event, and is hoping many people in our community go visit her there.

Cheryl received the email instructions below from the Senior Health Scientist Administrator of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS), NIH , for table exhibitors at Rare Disease Day at NIH. For those attending, here is a copy of this email so that you will know where Cheryl will be:

When you arrive at the NIH Clinical Center please look for the Office of Rare Diseases Research table. We will have a listing of the table assignments. The tables will be arranged in the South Lobby of the Clinical Center (Building 10). The NIH Campus Shuttle has a stop on the south side of the building. If you arrive at the North Lobby, there will be directional signs directing you to Masur Auditorium. The South Lobby is around the corner and down the hall from Masur. The tables will be ready for you by 7:30 am. Please allow sufficient time in the Visitors Gateway Center to go through security. The tables will be approximately 3’ x 6’ and there will be two chairs with each table. The exhibits should stay up, when possible, through at least the afternoon break. You should take the exhibits down by 6 pm.

While we don’t require you to stay with the exhibits all day, we do hope that you maintain a presence there during the breaks (morning, afternoon, and lunch). We are looking into arranging monitors for the lobby so that people can watch the live video stream while still at the tables and posters.

Senior Health Scientist Administrator
Office of Rare Diseases Research
National Institutes of Health / NCATS

Our most sincere gratitude goes out to Cheryl for her hard work in representing MEBO Research in such a powerful way by not only doing the video on Trimethylaminuria, but also in setting up a table at this event.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

Subscribe for latest posts : Enter your email address:

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A EURORDIS and NORD Member Organization