Eden Lord

CEO @tda4rare, @my_rare_id, Rare Disease Advocate "We need a National Emergency Treatment Database For Rare Disease Patients"

[Eden Lord @emlord]

@lhamtil Now a cooking account?

[Duke Women’s Basketball @DukeWBB]

Super excited to join the family!! 💙

[Eden Lord @emlord]

Huge thanks to @JordanW_13_ and her heart of gold! @DukeWBB @goteamimpact

[Duke Women’s Basketball @DukeWBB]

Grateful and thankful that Cam would choose to be part of the team!! @JordanW_13_ #TeamImpact

[Eden Lord @emlord]

@GoTeamIMPACT & @DukeWBB thank you for walking alongside Cam! #TeamImpact

[Duke Women’s Basketball @DukeWBB]

Super excited to join the family!! 💙

[Eden Lord @emlord]

Thank you @DukeWBB and @GoTeamIMPACT for an amazing match!

[Duke Women’s Basketball @DukeWBB]

Excited to officially welcome Cam to The Sisterhood!

"Certainly, at Duke, we look for players with high academic goals, high academic standards. Cam is someone who fits perfectly, in terms of the type of person we're looking for."

#TeamIMPACT

[Eden Lord @emlord]

If you can believe it, @delaneythomas21 is even better off the court than she is on. Thank you for welcoming Cambria to the Sisterhood @DukeWBB!

[Duke Women’s Basketball @DukeWBB]

It’s an honor to have Cam as part of The Sisterhood.

🗣️ @delaneythomas21 #TeamIMPACT

[Eden Lord @emlord]

@NeenaNizar Spine issues are so tricky. So hard to know what the “right” course is.

[Eden Lord @emlord]

@GillianHSapia Agreed. When my 8-year-old daughter had papilledema, I was told that I was just “an uptight rare disease mom” & she didn’t need immediate treatment. We then took her to a hospital hundreds of miles away for a LP that saved her life. You move mountains for your kids.

[Eden Lord @emlord]

@jdflynn #RareDisease mom here. Happy to chat about inclusive models we’ve seen that prioritize the child 1st. Our daughter has progressed through Catholic schools K-12. She has a number of rare diseases & there are many ways to make accommodations that benefit everyone, even schools.

[Eden Lord @emlord]

@lhamtil This made me smile. Loved your parents - they were always so kind at Mass.

[Eden Lord @emlord]

Looking for a globally inclusive event to celebrate #WorldRareDiseaseDay next week? Join us for #24HoursOfRare, the only virtual event for the interational #raredisease community. Learn more at https://t.co/8Lo5mzWJ1T.

[Eden Lord @emlord]

@SikhFeminist @AftrTheShock @NeenaNizar @RiaanResearch Would love to chat offline with you @SikhFeminist!

[Eden Lord @emlord]

@RarePOV No excuse for not implementing safeguards, especially when so many hotels are continuing to offer customized food service options, quality air filters, and additional cleaning services for those who request it. It’s quite easy to meet these needs with a little thought & effort.

[Eden Lord @emlord]

@RareDiseaseDad Happy to connect you with a former keynote speaker we had at the first #rarefair. @clairebidwell is a grief expert and a trusted resource.

[Eden Lord @emlord]

@SikhFeminist Another fantastic grief resource is @clairebidwell who did the keynote at our first #therarefair event.

[Eden Lord @emlord]

@SikhFeminist @NeenaNizar @AftrTheShock was gracious enough to join the cross sectional faith discussion we held during one of our virtual events - she’s a fantastic resource.

[Eden Lord @emlord]

@NeenaNizar We are just lucky to shine a light on amazing patients blazing trails for the community - like yourself!

[Eden Lord @emlord]

@NeenaNizar As a small org that works to provide inclusive virtual & now (safe) hybrid events, one of the biggest challenges we face is the lack of word-of-mouth support. Our @24hoursofrare event highlights marginalized populations around the world & patients/caregivers attend free.

[Eden Lord @emlord]

Every year we host this free virtual event for the global #raredisease community to celebrate wins and share updates. Does your community have an update to share? #rarediseaseday2023 #ataxia #huntingtonsdisease #EhlersDanlosSyndrome

[24 Hours of Rare @24HoursOfRare]

Do you have an update you'd like to share from your #raredisease community at our #RareDiseaseDay event? Join us for #24HoursOfRare2023, the only global event held in celebration of the rare disease community.

[Eden Lord @emlord]

Trotting out an oldie but goodie for #raredisease patients this holiday season: 2 Ways to Gracefully Say 'No' When Life With Rare Disease Becomes Overwhelming https://t.co/9KJeMbtnRt