Our Odyssey Inc

02/11/2026

https://www.youtube.com/live/G9HKPZLKkKk

Raising Youth Voices is a new initiative by Rare Disease Day designed to ensure that young people around the world are included in conversations that will de...

06/25/2025

EveryLife Foundation news:

June RDLA Webinar
Thursday, June 26 | 1:00pm - 2:00pm ET

Join us for a RDLA Webinar tomorrow. Attendees will hear an overview of current rare disease legislation and learn how they can support.

Register: https://everylifefoundation.org/rare-advocates/webinars/?utm_campaign=RDLA%20Webinars&utm_medium=email&_hsenc=p2ANqtz--3alwB55NFJJqlEXlcUhKEWqcySUwH10XOlh5phkC798VYKGBjYNxc7mJrFmJvXD25zc-B5-ysg8c-LawbTj31CuoZLw&_hsmi=368505910&utm_content=368505910&utm_source=hs_email

Agenda:

Ensuring Lasting Smiles Act (ELSA): Becky Abbott, National Foundation for Ectodermal Dysplasias

New Era of Preventing End-Stage Kidney Disease Act:
Matthew Johnson, NephCure

Credit for Caring Act: Sarah Osuna, Alzheimer’s Association

Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act: Anna Fedewa, National Down Syndrome Society

Review of Reconciliation Legislation: Dylan Simon, We Are Family Foundation

06/18/2025

News from EveryLife Foundation!

Submit your Documentaries, Features, Shorts and Series!

Rare Reels is a unique opportunity that celebrates the art and craft of storytelling through documentary film. Each year, submissions highlighting important, diverse stories of and for the rare disease community are considered for showcase during Rare Disease Week. Trailers of any chosen films will be screened to our in-person audience during Rare Disease Week, with a panel discussion to follow.

Have a film you’d like to share? Click below to submit your piece.

06/13/2025

News from EveryLife Foundation:

Rare Across America: Rare Disease Legislative Advocates invites you to join us for Rare Across America from August 5-12. Through this program, you will have the opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story. Registration is open now and will close on July 11. Find more information and register.

06/06/2025

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06/06/2025

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06/06/2025

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04/11/2025

RDLA Mentorship Program Announcement

Are you someone who:

✔ Benefits from 1:1 coaching?

✔ Wants guidance in identifying advocacy goals?

✔ Desires extra support in building relationships with legislators?



Apply now to be a part of the RDLA Advocacy Mentorship Program!

Applications will close on Thursday, May 1.

Click Here to Apply or Learn More
The purpose of the RDLA Advocacy Mentorship Program is to create a year-round support system for advocates who are seeking more 1:1 support in their advocacy development and to foster a continued role for experienced advocates to hone their leadership skills.



Mentors and mentees will be offered basic guidance and required to meet virtually at least quarterly throughout the year. The mentor will provide 1:1 support for a minimum of one year and support individuals in various advocacy skill building opportunities such as pre and post event support for Rare Across America and Rare Disease Week, help developing their 30 second story, or other established goals.



Advocates with any level of advocacy experience can apply for the program. The mentors are outstanding patient and caregiver community members who have a leadership background and experience in legislative advocacy and are matched with selected mentees. Mentors have participated in Rare Across America and/or Rare Disease Week on Capitol Hill and are well-versed in building relationships with legislators.



If you have any questions, please contact Kendly Jones at [email protected].

02/28/2025

https://ourodyssey.org/blog/overjoyed-rdd

We Are Overjoyed About Accessible Gaming on Rare Disease Day! Feb 28 Written By Anthony DeVergillo Millis, Mass. Feb. 28, 2025 - Today marks Rare Disease Day, a global movement aimed at bringing awareness as well as access to diagnosis and treatment to the more than 300 million people worldwide livi...

12/28/2024

Greetings,

Most recently, my fellow Our Odyssey Board member, Anthony DeVergillo and I were invited to sit in on two of the Young Adult monthly meetups, both moderated by Kenna McEvoy. We listened and learned a little bit about each of the attendees and how much they enjoyed being able to get together, even virtually, with peers who can relate to what they are experiencing. We celebrated with one young woman who will be moving into her own apartment; we cheered as a young man shared that his article was published in his rare disease community newsletter and applauded for a new inclusive Facebook group that another young woman had created for her rare disease community.

During both sessions, we listened to their suggestions about holding topic gatherings including a book club, movie nights and even video game events. Seems that several didn’t realize that they shared the same taste in books and movies. What was even more fun to hear was how Kenna was able to meet up with two of the Meetup regulars while traveling over the holidays. That was an extra special bonus!

Why am I sharing this with you? Well, it seems that Our Odyssey provides to young adults (ages 18-35) a place to just be themselves, sharing what is important to them and engaging in fun conversations. Don’t we all just want to have that kind of place to do the same?

There is still time for you to make an end of the year gift to help Our Odyssey keep these monthly gatherings going while seeking other ways to enhance the programs for young adults living with a rare and/or chronic condition. Please head to https://ourodyssey.org/donate to make a donation that will keep our programs going. Please consider becoming a monthly donor, giving an amount that is best for you. I can assure you that every dollar will be put to the best use possible!

Best wishes for a wonderful New Year!

Jean Campbell
Our Odyssey, Board Chair

Donate Today! To make a donation by mail, please make your check payable to Our Odyssey and mail it to: Our Odyssey, 14 Milliston Rd. PMB 164, Millis, MA 02054To make a payment over the phone, call 774/270-7277. Every dollar donated to Our Odyssey goes directly to our programs and services that impr...

12/02/2024

On , as you read through all the invitations to support a wide range of patient advocacy organizations, please consider giving to Our Odyssey.

Our Odyssey offers a unique approach for young adults ages 18 to 35 to connect with others who share the common threads of living with a rare and/or chronic diagnosis. Our Odyssey is always seeking new ways to make those connections more meaningful and responsive to their challenges. Your donation, whatever you can give, will most assuredly enable Our Odyssey to be the gathering place where friendships start and grow.

Our Odyssey relies on the kindness of others to continue to be there for young adults who rely on us! Please share the Our Odyssey message with your family and circle of friends!

To make a donation to Our Odyssey please visit here https://ourodyssey.org/donate

To learn more about how to be involved in Our Odyssey, please visit: https://ourodyssey.org/support?blm_aid=0

Donate Today! To make a donation by mail, please make your check payable to Our Odyssey and mail it to: Our Odyssey, 14 Milliston Rd. PMB 164, Millis, MA 02054To make a payment over the phone, call 774/270-7277. Every dollar donated to Our Odyssey goes directly to our programs and services that impr...

07/05/2024

🌟 Join the 2024 One Rare Experience (ORE) on July 17-20 at the University of Albany! 🌟

This year, ORE is offering a free program for young adults with rare conditions that will focus on mental health and mindfulness. Expect four days filled with lifestyle, health, wellness sessions, art, employment workshops, and plenty of fun networking opportunities. Travel costs are covered if you apply ASAP!

Interested? Apply here: surveymonkey.com/r/J8J8CB9

Exciting News! Attendees will receive a free link to Overjoyed software, an accessible game controller developed by Anthony DeVergillo, to enhance social gaming experiences. Stay tuned for our virtual game night announcement in August!

Questions about Overjoyed or the OneRare Experience ? Email: [email protected]