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Rare Disease
Light Up for Rare
The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases.
NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 25 million Americans and their families are believed to be affected by rare diseases.
Participants are encouraged to light or decorate their homes in blue, green, pink, and purple at 7 p.m. local time on Feb. 28. (Blue should be used if only one color is possible.) NORD suggests using NovaBright to light up a building, monument, home, or neighborhood in these rare disease colors.
To join the Light Up for Rare campaign, sign up here. Participants should complete the applications required by the landmarks they pledge to light up, which could include historic buildings and homes, schools and universities, businesses, stadiums, bridges, and monuments. A downloadable template request is available to ask cities and buildings to participate in the initiative.
Once requests are approved, participants should inform NORD so the organization can track the buildings that will be illuminated for Rare Disease Day.
Light Up for Rare is part of the Global Chain of Lights campaign, which aims to unite the rare disease community across the globe and symbolically break the isolation caused by the COVID-19 pandemic.
The European Organization for Rare Diseases (EURORDIS), NORD’s counterpart in Europe, is coordinating the Feb. 28 awareness day there along with several patient advocacy groups. On leap years, Rare Disease Day falls on Feb. 29, the rarest day of the year.
Download the Light Up for Rare toolkit here. Information on how to illuminate a building can be found here.
The general public, as well as caregivers, healthcare professionals, researchers, clinicians, policymakers, and industry representatives are encouraged to participate in Rare Disease Day advocacy and events. Other toolkits and resources for Rare Disease Day are available here.
After buildings and landmarks are lit up in Rare Disease Day colors, participants are encouraged to share photos and videos on social media. Please use the #RareDiseaseDay and #ShowYourStripes hashtags so the efforts can be spotlighted.
More information at https://rarediseases.org/rare-disease-day/rare-disease-day-light-up-for-rare/
Record a Video and Receive Rarity the Zebra!
Please help us spread the word to other patients and caregivers about Rare Patient Voice by submitting a short video about your experience with us. Using the Storyvine app, recording a video on your phone is quick, easy, and fun! Videos will be featured on our website, on social media, and in newsletters. Check out and join the growing group of RPV patients and caregivers who have recorded stories! https://rarepatientvoice.com# |
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Follow these steps to record and submit your own video! https://admin.storyvine.com/
Step 2: Download the Storyvine app from the App Store or Google Play Step 3: Film and upload your video! |
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To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Stacy of South Carolina, our December 1 raffle winner! Our next raffle will be held in early January. |
🎤 Living Rare Living Stronger ~ Nord® Patient and Family Forum June 26-27Th
2021 Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27.
The conference brings together patients, families, healthcare professionals, and other supporters for learning, sharing, and connecting.
Due to the ongoing COVID-19 pandemic, the general sessions, breakout workshops, and networking will again be virtual. The sessions, which will offer perspectives from patients, caregivers, and the medical community, will air live and be recorded for later viewing. Throughout the forum, participants will be able to visit the exhibit hall and have peer meetings with other attendees.
Also this year, the Rare Impact Awards will return as part of the program. That presentation, on June 28, honors individuals, organizations, and industry innovators for exceptional work benefitting the rare disease community.
“The health and well-being of people living with rare diseases, their loved ones and those working to improve their lives continues to remain a top priority for all of us here at NORD,” the organization stated in its forum announcement.
“The COVID-19 pandemic brought us new ways to engage with our community and our 2020 virtual program was the most successful forum to date! In 2021 we will continue to work hard to keep our community healthy and safe while engaging in this impactful program,” NORD said.
Registration for the “patient-centric” event is $39 for patients, caregivers, students, and NORD patient organization representatives. The cost is $75 for professional advocates, people from academia, physicians, and government representatives, and $500 for NORD corporate council members. For pharmaceutical, insurance, or other representatives, registration is $650.
As for the agenda, the opening discussion will be on “The Patient-Professional Partnership” and will include three stories on the close bond between patients and their care professionals.
Breakout sessions for Saturday, June 26 will include “Coping with Grief and Anticipatory Grief,” “Shared Decision-Making with Your Care Team,” and “Working While Rare” as first offerings, followed by “Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials,” “Navigating Insurance, Social Security Disability and Patient Assistance Programs,” and “The ABCs of Advocating for Your Child’s Education” in the second group of workshops.
Those will be followed by a plenary discussion on the topic “Building Resilience in a Time of Unknowns.” The speakers will explore how patients coped while waiting for a diagnosis, how they are faring while waiting for new treatments, and how they have kept it together during the pandemic.
June 27 will start with an opening plenary discussion titled “The Rare Sibling Experience.” Here, three siblings of rare disease patients will share their experiences, including how they became advocates.
Breakout sessions on this day will include “Fighting Back and Fighting Forward Through Advocacy,” “Palliative Care: Debunking the Myths,” “Rare in the Family: Navigating the Roles of Patient, Parent, and Caregiver” in the first set of discussion groups. Later offerings that Sunday will include “Aging with a Rare Condition,” “Finding Your Community and Building Your Support Network,” and “The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access.”
The closing plenary discussion, titled “Rare Breakthroughs Now and on the Horizon,” will cover the latest advances in the diagnosis, treatment, and care of rare diseases.
Early this year, NORD put out a call out for individuals who were willing to share their real-life experiences with rare diseases at the conference. In all, including physicians, nurses, and other healthcare professionals, the conference will feature some 55 speakers. Access to the virtual program will be provided via email the week of the event.
💰Study Opportunity for Cushing’s Patients
This is a 30 min Online Survey and Compensation is $50.00
Sign up at this link to receive an email invite to the study and see if you qualify.
📞 Cushing’s Disease Study
We have an opportunity for you to take part in a Cushing’s Disease study (IPS_4636) for Patients. Our project number for this study is IPS_4636.
Project Details:
- Web- Camera Interview
- There is a homework component
- Interview is 75-minutes long
- 125 Reward + 100 homework
Things to Note:
- Patient study only, Caregivers please pass the link along
- Unique links, please do not pass along for 2nd use
- One Participant per household
- Want to share this opportunity? Let us know and we can provide a new link
- Preliminary questions are Mobile Friendly!
- Save this email to reference if you have any questions about the study!
- If you have any problems, email pm3@rarepatientvoice.com and reference the project number. If you hit reply, you will get an auto do-not-reply email.
If you are interested in this study, please click the link below to answer a few questions to see if you qualify.
Study Link: Link
- OR if the Study Hyperlink is not clickable above, please copy/paste this URL below.
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/surveystart.php?surveyID=hld5jbejublj&panelMemberID=trfnbc7mvduh1gseff1h&invite=email
Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.
📅 Rare Disease Day 2019
What am I doing for Rare Disease Day?
For me, it’s more that one day out of the year. Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards and brochures.
My husband also passes out cards and brochures.
Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.
Posting on the Cushing’s Help message boards about Rare Disease Day. I post there most every day.
Tweeting/retweeting info about Cushing’s and Rare Disease Day today.
Adding info to one of my blogs about Cushing’s and Rare Disease Day.
Adding new and Golden Oldies bios to another blog, again most every day.
Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?
And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)
~~~
Why am I so passionate about Rare Disease Day?
I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.
I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.
And then, there’s the adrenal insufficiency…
And growth hormone deficiency…
If you’re interested, you can read my bio here: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/
What are YOU doing for Rare Disease Day?
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📅 Register for 2018 RARE Patient Advocacy Summit
The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.
Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:
- Living with a life-altering condition, before and after diagnosis
- Becoming successful architects of your health and that of your disease community
- Building on advances as a patient, partner, and driver in drug development
- Learning about the latest science and technology that drive innovation
The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Together, we are strong. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!
Click here to register now:
Click here to view and download an up-to-date PDF of our full Summit Agenda. New speakers and sessions will be added each week, so be sure to check back before finalizing your Summit plans.
Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.
We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip. Click here for a comprehensive Summit travel guide.
Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.
📅 Rare Disease Day
What am I doing for Rare Disease Day?
For me, it’s more that one day out of the year. Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards and brochures.
Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.
Posting on the Cushing’s Help message boards about Rare Disease Day. I post there most every day.
Tweeting/retweeting info about Cushing’s and Rare Disease Day today.
Adding info to one of my blogs about Cushing’s and Rare Disease Day.
Adding new and Golden Oldies bios to another blog, again most every day.
Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?
And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)
~~~
Why am I so passionate about Rare Disease Day?
I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.
I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.
And then, there’s the adrenal insufficiency…
And growth hormone deficiency…
If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
📅 Invitation to Patient Day 2018
Please join us for Patient Day 2018 at Ultragenyx in Novato, CA on Saturday, April 7, 2018, for a day of live music, food, games, refreshments, and much more!
A limited number of travel scholarships will be available for patients and loved ones that may be joining them to support their participation in Patient Day 2018. For event details, travel scholarship information and to register, please click here.
An email confirmation will be sent to you upon completion of your registration. Travel scholarship awards will be sent out after February 1, 2018, once a decision is made.
We welcome all families living with any rare disease to join us in celebrating their strength and courage, while also recognizing their daily challenges and sacrifices. The interactions between our employees and families provide a first-hand education about living with rare disease and further inspires the work we do for patients and families. We would like to honor and thank all of the patients who are participating in our clinical trials; however, we also have to follow federal regulations regarding the avoidance of influencing patients in our studies. So sadly, we cannot have patients who are currently participating in selected Ultragenyx or Audentes studies attend Patient Day 2018.
If you are a healthcare provider caring for people with rare diseases, please feel free to forward this invitation to your relevant patients.
Please contact us if you have any questions or are unable to access the registration site.
Hope to see you there!
Patient Day Registration Team