Today is #RareDiseaseDay 2017

Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases! 

With the theme of research, and the slogan, 'With research, the possibilities are limitless', #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. 

This year's Rare Disease Day video, which has been viewed over a hundred thousand times and translated into over 30 languages,  draws a parallel with a routine that many of us go through multiple times a day - searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response 'your search had no results'. It also highlights the hope and promise that comes with additional research into rare diseases, something that must be continuously strived for. 

A BRAND NEW digital magazine giving a voice to patients affected by RARE conditions and the charities that represent and support them.

http://www.rarerevolutionmagazine.com/

World Rare Disease Day 2016

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  Learn more about the history of Rare Disease Day.

The 2016 global theme, “Patient Voice,” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside our sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign.  Over 80 countries participated in Rare Disease Day 2015.  To learn what’s happening around the world, visit the global Rare Disease Day website at rarediseaseday.org.

Anyone can get involved in Rare Disease Day awareness.  On this site, U.S. participants can find, suggest and get involved in events taking place across the country.  We also have suggested activities for those who are new.

Rare Disease Day 2014: Join Together for Better Care

The video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families.The seventh Rare Disease Day takes place on 28 February 2014.  
"Join Together for Better Care" and participate!

Join an activity taking place near you to demonstrate global solidarity.
www.rarediseaseday.org

1 person in 20 is affected by a rare disease

1 person in 20 is affected by a rare disease! 

Today is a World Rare Disease Day 2013!

Life-threatening or chronically debilitating diseases – mostly inherited – that affect so few people that combined efforts are needed to:

• reduce the number of people contracting the diseases
• prevent newborns and young children dying from them
• preserve sufferers' quality of life and socio-economic potential.

In EU countries, any disease affecting fewer than 5 people in 10 000 is considered rare. That number may seem small, but it translates into approximately 246 000 people throughout the EU's 27 member countries. Most patients suffer from even rarer diseases affecting 1 person in 100 000 or more.

It is estimated that today in the EU, 5-8000 distinct rare diseases affect 6-8% of the population – between 27 and 36 million people.

 

 

World Rare Disease Day 2013

Yann le Cam, Chief Executive Officer EURORDIS - European Rare Diseases Organisation, has this message for Rare Disease Day 2013 highlighting the need to work together internationally: "Rare Disorders without Borders".

Rare Disorders without Border: 28 February 2013

Dear Respiratory Friends we are happy to support World Rare Diseases 2013!

The sixth Rare Disease Day takes place on 28 February 2013. This year's slogan "Rare Disorders without Borders" emphasises the need for international cooperation. Join an activity taking place near you to demonstrate global solidarity. Let's go beyond borders for rare disorders. Show your solidarity today!

This video clip has been directed by Carlo S. Hintermann and produced by Citrullo International and Digital Room with financial support from EURORDIS and the Health Programme of the European Union.
The patients featured are members of: Associazione Italiana Sindrome di Noonan, Duchenne Parent Project and Xeroderma Pigmentosum Society
We thank them and Simona Bellagambi from the Federazione Italiana per le Malattie Rare (UNIAMO) for their invaluable contribution.
More than 20 people gave their time to this project that involved stop motion animation and live action cinematography. We also thank Mario Salvucci for the original music composed for this video. 

We are inviting you on Italian event, organized by our friend Rosalba Mele:

 

Today is a Global Pulmonary Fibrosis Awareness Day

Today is a Global Pulmonary Fibrosis Awareness Day!
Respiratory Decade is participating actively in promoting of this important event at the global level! You can join today webcasts from Modena, Italy and Denver, USA!

In 2007, the United States Congress supported the designation of "National Idiopathic Pulmonary Fibrosis Awareness Week" to take place each year in September. This year, as part of a full month of awareness activities, was designated September 22nd as Global Pulmonary Fibrosis Awareness Day and will offer a "Living with Pulmonary Fibrosis" educational event in partnership with the University of Modena and Reggio Emilia in Modena, Italy, and National Jewish Health, in Denver, Colorado. Sessions will include: “What is Pulmonary Fibrosis?,” "The Role of Support Groups,” and “Tools for Living Better with Pulmonary Fibrosis" and will be followed by a Q&A period.

Webcasts will take place in Modena, Italy, at the University of Modena and Reggio Emilia (San Geminiano Complex, Via San Geminiano 3) and in Denver, Colorado, at National Jewish Health (Molly Blank Conference Center).

In addition to the broadcast locations in Modena and Denver, individuals will be able to view the webcasts at Interstitial Lung Disease (ILD) centers in Europe and the United States. Patients, caregivers, and family members will be able to come together to view the presentation in a supportive environment at a convenient location. A health care professional will be present at these sites to answer any questions viewers may have.
The session in Modena will begin at 4:00 p.m. (CEST) / 9:00 a.m. (CDT)
(Attending in person? Registration begins at 3:30 p.m.)
The webcast will be presented in English with simultaneous live French, German, Italian, and Spanish translations.
The Denver session will begin at 10:00 a.m. (MDT) / 11:00 a.m.(CDT)
(Attending in person? Registration begins at 9:30 a.m.)
To view the webcasts click on 'Live from Modena' and 'Live from Denver' in the top menu.

If you are unable to attend the ILD center viewings, anyone may view the webcasts from the comfort of their own home via the internet.

Webcasts will be available at www.livingwithpulmonaryfibrosis.org

Rare Disease Day is 29 February 2012!

February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.

One more inspirational story about Rare Disease: Mastocytosis.

World Rare Disease Day 2012

On the last day of February, millions of people around the world will be observing World Rare Disease Day.  There will be activities across the U.S., throughout Europe, in Canada, in Australia, in China and elsewhere to focus attention on rare diseases as a public health issue.

In the U.S., a disease is considered rare if it affects fewer than 200,000 people.  Some rare diseases such as Lou Gehrig’s disease (ALS) are well known to the public.  However, many others are not, and you can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not even being studied by any medical researchers.
Keenan Cahill became internet legend, he is a boy with Maroteaux–Lamy syndrome. We want to share one of his inspirational videos, which demonstrates to everybody that people with rare conditions are fantastic!

Fifth International Rare Disease Day has a very beautiful motto:

"Rare but Strong Together"