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Sep. 16, 2015

TOPIC: Events, Featured News, Get Involved

Rare Disease Day 2016 Theme and Slogan Announced

Posted by Jennifer Huron
Rare Disease Day official logo

Rare Disease Day official logoTheme: Patient Voice

Slogan: Join us in making the voice of rare diseases heard

As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited to announce the theme for Rare Disease Day 2016 with EURORDIS, our partner and the founder of this amazing event. We look forward to working with everyone to build on the successes of previous years and make this the best Rare Disease Day yet.  Please click on this link or read the official announcement below.

Next year, 2016, will mark the ninth year that the international rare disease community celebrates Rare Disease Day.

On February 29, 2016, people living with or affected by a rare disease, patient organizations, politicians, caregivers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.

The Rare Disease Day 2016 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 Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

Patients and patient advocates use their voice to bring about change that:

  • Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels
  • Increases and improves rare disease research and orphan drug development
  • Achieves equal access to quality treatment and care at local and national levels, as well as earlier and better diagnosis of rare diseases
  • Supports the development and implementation of national plans and policies for rare diseases
  • Helps to reduce isolation sometimes felt by people living with a rare disease and their families

Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world.

The patient voice:

  • Is stronger when patients receive training so that patient advocates are equipped with the skills and information that they need to be able to represent the patient voice at the local, national and international level, within and on behalf of their patient organizations.
  • Is vital because rare disease patients are experts in their disease. In situations when there is often a lack of medical expertise or disease knowledge because a disease is so rare, patients develop expertise on treatment and care options. With this expertise, the voice of a rare disease patient is often more inherent to the decision-making process regarding their treatment or care options.
  • Is increasingly present and respected in the medicines regulatory process, during which patients bring real-life perspective to the discussion. This voice needs to be encouraged to become stronger all along the life cycle of the R&D process, from the early stages of development of a medicine, right through to when the medicine is in use in a wider population of patients. This will help to ensure that medicines are developed more efficiently and in turn will result in patients accessing more, better and cheaper treatments at an earlier stage.

More information

  • Rare Disease Day 2016 coming soon… new websites will be launched this fall in both the U.S. and Europe
  • Are you planning an event in the U.S. or want to get involved in your state?  Reach out to NORD and contact Kristen Angell at kangell@rarediseases.org
  • Stay connected and get updates on Facebook & Twitter

21 Responses to “Rare Disease Day 2016 Theme and Slogan Announced”

  1. polly moyer says:

    I think this is an excellent theme for Rare Diseases Day 2016. In the UK the patient group I represent (MdDS) has been given a strong voice through Findacure and RDUK amongst others. However I am still struggling to have our voices heard at the relevant conferences which seem to be exclusively aimed at the clinicians who diagnose and treat patients with MdDS and other balance conditions. I – and others – are working hard to change this dynamic.
    For this condition amongst others, medicines are rarely the answer and the best treatments are with physical interventions such as opto-kinetic stimulation and cranial stimulation. For that reason I hope that, in future years, RDD will focus on the development of such interventions alongside the development of medicines.
    Many thanks for all you do to support our voices gaining greater representation.

  2. Jack Fannan says:

    Gonna make a lotta noise for my granddaughter Layla, who’s kicking PKU’s butt!

  3. Christy Brom says:

    How wonderful! Alot of voices are going to heard in the rare disease/neurological community when, hopefully, the 21st C entury Cures Act is finally passed and signed into law by President Obama. What a wonderful Christmas present that would be for all of us this year.

  4. Susan Early says:

    Hoping everyone will realize how important this is and get behind and support this! My daughter’s life depends on it!

  5. A SHOUT OUT for a cure for Alpha-1 Antitrypsin Deficiency.

  6. Rebecca Ambrose says:

    Thank you for the notification of the upcoming year’s theme and slogan. I have shared the awareness-raising opportunity amongst the Huntington’s disease community.

  7. […] of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate […]

  8. Kitty Myers says:

    How can I get involved? How could I help locally?

    Thank you,
    Kitty Myers
    215-804-6494

  9. Irfan says:

    4 years my two twin cousins born, in first weeks they were looking normal but after that things start getting wrong. Their small disabilities started becoming obvious. Their parents consulted many specialists but all of them declare it as Natural. Their parents were first cousin . This was first time I feel we are too weak to control many things.
    Article is informative and remind me a short incident which I share with you, I will share this article with the parents as well.

  10. Julie Plemons says:

    My son has just been diagnosed with MED. It took us 5 years to find doctors that knew what was going on. I am looking forward to being a part of RDD 2016 on behalf of my son and his journey!

  11. Jacqueline Lefrere says:

    Husband, family ? will be shouting out loud about PSd .

  12. Steve Zarren says:

    Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to http://www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

  13. Carita Alston says:

    My grandson has Prune Belly Syndrome (Eagle Barrett Syndrome) and this is great to see and hear about. His mother and I just recently started a Support/Awareness Foundation in his honor (his name is Rian lol) and we recognize that he’s not the only one affected by this, but we will educate, support and spread awareness about this Rare Disease because prior to us being personally affect, we didn’t know. And if you don’t know, then you can’t help. Blessings and I’m honored to now be in support with “Rare Disease Day” Celebration/Awareness.

  14. BarbaraCloar says:

    Great Theme! Will do even more this year to spread the words about this devastating disease and the isolation that goes with having a rare disease. Need research now not until a famous person gets it. I have been an orphan going on25 years and nothing new in treatment yet. Will push limits on awareness

  15. Barbara Cloar says:

    Wonderful Theme and Slogan! Isolation is one of the biggest effects of having a rare disease. I have had Stiffperson’s Syndrome for 25 years and treatment is about same. Research is needed until someone famous is afflicted! I will push the limits more this year to make people aware of NORD and rare diseases !!

  16. Mike Cain - (UK) says:

    If publicising RDD id the trademark and logo so private?

  17. Wonderful post! We will be linking to this particularly great content on our site.

    Keep up the great writing.

  18. Heartfelt thanks NORD! for providing this opportunity, resources and for helping us rare disease patients & families have our voices heard! We will be part of the NORD State House event in Tallahassee, FL on Rare Disease Day February 29th. We are grateful for the opportunity to be part of rare disease awareness here in Florida. After years of misdiagnoses and our voices not being heard we feel that now someone is listening. We will be advocating for GIST Sarcoma, a rare cancer (malignant gastrointestinal stromal tumor) and for pontine cavernoma aka brainstem angioma for our 15 year old son. We hope to see our fellow Floridians in Tallahassee!

  19. Katharine Chavez says:

    I have a rare eye disease…Eales Disease! I came across your website and appreciate the fact that there is a special day for people like me. I appreciate that so much.

    Kat Chavez,
    New Mexico

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