UTAH RARE DISEASE DAY 2016 is February 27th & February 29th. Planning has started! Join UtahRare.org
UTAH RARE DISEASE DAY 2016 is coming soon! February 27th & 29th!! Please share and “Like” the Utah Rare Facebook Page to find out more information about our upcoming events! We have a lot of big plans. We need everyone in the RARE community and beyond to help raise awareness and help with sponsors in order to have the following events!
Rare Disease Day 2016 Theme and Slogan Announced
Posted by Jennifer Huron
Theme: 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.
Dear Utah Rare Family and Friends,
A special thank you to Cristina Might for being the Committee Chair for Utah Rare Disease Day 2015. The events last year surpassed all of our exceptions.
During the last year, the Utah Rare connections have become stronger and change is currently happening here in Utah.
Together, we can make change for the lives of families living in the world of rare. Together, we can raise awareness for Rare Disease Day 2016!
We would love ALL of the RARE community and beyond involved! Please reach out! We want your help!
Much love,
Gina Szajnuk, Committee Chair, Utah Rare 2016
Here are the current planned events for Utah Rare Disease Day 2016.
Saturday, February 27, 2016
2nd Annual Utah Rare Disease Day Symposium
1:00 PM – 4:00 PM at the Salt Lake City Marriott on the University Utah campus
A TED-style event to inspire, motivate, and spark collaboration among the rare disease stakeholders — patients, healthcare providers, researchers, companies, institutions, legislators — in our state. Registration required. 300 person capacity. Event will be live streamed and recorded for distribution.
NBA Game – Utah Jazz vs. Brooklyn Nets
7:00 PM – Utah Jazz Arena (ESA Arena)
Thirty children with rare conditions will be on the court for the National Anthem, while 120 tickets have been donated by the Utah Jazz Player Programs for their families and others in the rare community. (A group dinner is tentatively pending.)
Monday, February 29, 2016
Utah World Rare Disease Day Statehouse Event
3:00 PM – 5:00 PM at the Utah State Capitol Building Rotunda.
An event for patients, caregivers, legislators, and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Utah. No registration required. 1,500 person capacity.
Rare Undiagnosed Network (RUN) Gala
6:00 PM – 9:00PM –La Caille (tentative – based on sponsorship)
This gala is being hosted by RUN to celebrate Utah’s Rare Community and raise funds to support the Rare and Undiagnosed Program currently being developed through the University of Utah and Primary Children’s Hospital. RUN is a 501(c)(3) organization.
About Rare Disease Day
Rare Disease Day takes place on the last day of February each year. In Utah we are holding a 2-day event. 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. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
About Utah Rare
Utah Rare is a coalition of rare disease stakeholders formed to organize the statewide recognition of Rare Disease Day.
About the Rare & Undiagnosed Clinic
The Rare & Undiagnosed Program is a community initiative under development at the University of Utah to serve the rare and undiagnosed patients in our five state, intermountain region. Through thorough, coordinated evaluation and ongoing medical care, rare patients will receive diagnoses faster, access available treatments sooner, and make more informed decisions for the future of their families. The greater community will benefit from lower health care costs and lower economic burden on working families.
All funds for Utah Rare will be through the Rare & Undiagnosed Network (RUN) a 501 (c) 3. For more information as well as a sponsorship packet, please email gina@utahrare.org or call Gina Szajnuk at (310) 883-4353.
Please use this LINK: Ask Senator Hatch to Lead the Formation of a Rare Disease Caucus
Link: Senator Hatch’s website for more information about the Senator
Dear Senator Hatch,
We write today to thank you for your continued leadership on Research, Innovation, and the health of our Nation. Your efforts to support patients and families experiencing rare disease are particularly critical. As you know, 1 in 10 Americans suffers from a rare disease: taken together, rare diseases are not rare and affect all our lives in some way.
As concerned constituents and members of the rare disease community, we seek to raise awareness about critical rare disease issues with policymakers and in particular, your colleagues in the Senate. The issues addressing the rare disease community provide critical lessons for our country: First, as technology enables personalized/precision medicine, rare disease serves as an important stepping-stone in our efforts to responsibly apply innovation to small numbers of patients; Second, research and development for rare diseases have directly led to some of the most meaningful and broadly applicable breakthroughs in medicine, such as the discovery of statins; Finally, and most importantly, patients and families struggling with rare disease represent the best of our nation – these families face hardship most will never understand, yet they continue to work, study, organize, and advocate – we owe it to them to catalyze their incredible efforts.
Given your longstanding interest and commitment to improving health for all Americans, we respectfully request that you take a leading role in the creation of a Senate Rare Disease Caucus and serve as its inaugural chairman. On the House side, the Rare Disease Congressional Caucus (founded in 2009) is co-chaired by Reps. Lance (R-NJ) and Crowley (D-NY), whom are supported by 86 caucus members.
We believe that creating a Senate Rare Disease Caucus will raise awareness about the challenges faced by the rare disease community, highlight the broad benefits of work on rare disease, and shed light on the policy solutions that are urgently needed.
We thank you very much for your past support of policies that advance health for all Americans and we are so grateful for your consideration of this request.
Sincerely,
