28 Feb 2022
Redesigned AMEND USA Website Lets Us “Share Our Colors”
It’s a great time to unveil our redesigned website, made in collaboration with our UK partners, because Rare Disease Day is Monday, February 28! As we all know, Multiple Endocrine Neoplasia (MEN) is a rare syndrome that is inherited genetically. That makes Rare Disease Day a very important opportunity to raise awareness about MEN disorders and reach more patients, their families, and caregivers.
Websites are never done, because there is always more to say, more ways to connect, and more ways for our community members to engage with each other. We are happy to see advancements and improvements in the way we deliver our message.
“Part of the AMEND USA mission is to provide support to anyone affected by MEN disorders, and the website is essential for that outreach,” John Metzcar, MS, President of AMEND USA, said. “We plan to continue developing the knowledge and information patients need on the website, while helping them connect to a larger community of people who understand the experience of living with MEN disorders.”
If you are visiting the AMEND USA website for the first time, please take a look at our resources. The site offers pages dedicated to MEN1, MEN2 (MEN2A), MEN3, and Pheo Para (PPGL) syndromes. Please be sure to fill out the form to register as a member of our community for free. You’ll start receiving our newsletter and be connected to what’s happening in our community. https://amendusa.org/patients/join/
Along with learning more about MEN on this website, there are many ways to get involved with Rare Disease Day 2022. This year’s theme for Rare Disease Day is “Share Your Colors.”
- Register for the Rare Disease Day online event https://ncats.nih.gov/news/events/rdd with the National Institutes of Health, Monday, February 28 from 10am to 6pm EST / 7am to 3pm PST. The agenda is available here (PDF).
- Download sharable messages and graphics about rare diseases from the NIH National Center for Advancing Translational Sciences. https://ncats.nih.gov/engagement/rare-diseases-community-resources
- You can also follow the official Rare Disease Day account on Twitter at https://twitter.com/rarediseaseday
- Spend some time learning about MEN disorders – a great place to start is the patient stories you can find right here on this website. http://amendusa.org/patients/patient-stories_men1/
Here are just a few highlights from the long list of observations around the world:
- Illuminating world monuments in colors that honor and observe Rare Disease Day – find a monument near you with this map. https://www.rarediseaseday.org/category/events/#type=illuminations Or learn how to light your own home in a colorful display to observe Rare Disease Day: https://www.rarediseaseday.org/downloads/lightupforrare/
- Webinars from around the world in various languages that range from chat sessions, specific disease educational sessions, presentations from experts and much more – find the list here. https://www.rarediseaseday.org/category/events/#type=webinar
- There are also trainings, performances, social media events and much more. Visit the full list here. https://www.rarediseaseday.org/category/events/
Whatever way you engage with our website and with Rare Disease Day, we’re happy you are here to help us “Share Our Colors.”