Join us for a Virtual RDLA Regional Meet and Greet Session!

Meet Rare Disease Advocates from your state and region, get to know our YARR members, and win prizes!

Each session is arranged based on where you live and hosted by RDLA in partnership with the Young Adult Representatives of RDLA (YARR) and State Organization Leaders.

This is a fun opportunity for the rare disease community in each region and state to get together before Rare Disease Week to foster community and camaraderie. Whether you are new or a veteran of the rare disease community, there will be something for everyone. We want to take time to get together socially before the excitement of Rare Disease Week! See below for details on the virtual session in YOUR region.

Please note that you will be prompted to select which Meet and Greet session below you would like to attend once you reach the checkout page. One session per attendee. Please choose the session with the state from where you are located. Please note the time zone!

Virtual Regional Meet and Greet Sessions:

January 11 at 5-6 pm PST: AK, AZ, CA, CO, HI, ID, MT, NV, NM, OR, UT, WA, WY, U.S. Territories

January 11 at 6-7 pm CST: AR, IL, IN, IA, KS, MI, MN, MO, NE, ND, OK, SD, WI

January 13 at 6-7 pm CST: AL, FL, GA, KY, LA, MS, OH, SC, TN, TX, WV

January 13 at 6-7 pm EST: CT, DC, DE, ME, MD, MA, NH, NJ, NY, NC, PA, RI, VT, VA

No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates.

RAFFLE DETAILS: To be entered to win the raffle, registration AND attendance to one Regional Meet and Greet 2022 session is required. Only one winner per session. No repeat winners for attending multiple sessions.

This is NOT registration for Rare Disease Week. If you have not registered for Rare Disease Week and would like to please click here.

For more information or for any questions, please contact Rachelle Raudes, RDLA State Advocacy Fellow at rraudes@everylifefoundation.org or visit our State Advocacy Hub.

Register Here for a Virtual Meet and Greet Session
You can find the schedule of events for Virtual Rare Disease Week below.

Virtual Rare Disease Week on Capitol Hill 2022 Schedule of Events

Tuesday, February 22

1:00-2:00 pm ET: Rare Disease Congressional Caucus Briefing

5:30 -7:30 pm ET: Rare Disease Documentary Screening

Wednesday, February 23

1:00-5:00 pm ET: Legislative Conference Day 1

5:00 pm ET: Virtual Rare Artist Gallery Opens

Thursday, February 24

1:00-5:00 pm ET: Legislative Conference Day 2

5:15-6:00 pm ET: YARR Meetup

Friday, February 25

12:00-1:00 pm ET: Office Hours

Monday, February 28

Rare Disease Day at NIH

Tuesday, March 1

Meetings with House of Representatives

Wednesday, March 2

Meeting with Senators

Basics: Adrenal Surgery: One Patient’s Experiences

Extracted and adapted from this series: https://cushings.invisionzone.com/topic/51040-on-my-way-to-getting-well/

Post 1) I was officially diagnosed with Cushing’s yesterday. I have a CT scan to check on my adrenal tumor and a meeting with my surgeon tomorrow. Hopefully they will schedule surgery for Monday or Tuesday. I have suffered over a year with this, been in congestive heart failure, and believe this cortisol caused my son to be stillborn in March. It’s been the year from hell. Please pray that all goes well tomorrow and that I will be cured of this once and for all!!

Post 2) Surgery set for the 23rd!!!!! He is planning a right adrenaltectomy. I am so darn excited…

Post 3) I’m almost two weeks out of adrenal surgery. He removed the tumor & my gland. This has been the hardest and most painful two weeks of my life. I am already noticing little changes in my body. My skin is getting texture, my hair is not as brittle, my swelling goes down each day, and my nails are white instead of yellow and are stronger. I am getting hair back on my arms, legs, & feet too. I can’t wait to continue to get well. I am ready to be able to get out and about. I am pretty much housebound now because of the pain of the withdrawal from the cortisol. I stay on my painkillers and rest in my recliner. Hubby bought it for me because I can’t sleep in the bed comfortably. He’s the best. He’s been sleeping on our air mattress in the living room with me for almost 2 weeks now. He is always there to help me get out of the recliner when I need to. He is amazing. Just wanted to update you all. Getting better everyday.

Post 4) I am on 40mg Hydrocortisone daily right now. I will have my first wean close to Christmas. I have an appt. on the 21st with my endo. She is fantastic and saved my life from this stuff. I am so blessed. Today is a rough day. I did have 2 good days in a row which was a huge blessing. Thanks for thinking of me!

Post 5) Well, I just survived month 1 of recovery. It was HORRIBLE. I have never had so much pain in my life. I am still on 40 mg and my endo. wants me to wean 10 mg starting on the 27th. We’ll see how it goes. I have so much pain, shaking, chills, no sleep NOW. I can’t imagine how its going to be on a lower dose. My cortisol level was SO HIGH (2107) before surgery. I knew this withdrawal was going to be terrible. SHe had never seen a level as high as mine before. The lab actually tested my urine twice because they didn’t believe it the first time. I am doing a lot of resting right now. I am very nervous about my mother leaving on New Year’s Day. I don’t know how I am going to handle my 3 year old on my own. I hurt so badly and my vision isn’t the greatest yet. Thanks for thinking of me and writing me back.

Post 6) We have another call into my endo about my suffering. I have done nothing but shake uncontrollably all day so far. I hurt so badly. I am up every hour at night writhing in pain. I refuse to suffer like this anymore. I want some relief. Thank you so much for all of the advice. It means the world to me. Great news is that I am off my BP meds as of today!! Cardiologist’s office said I could quit them. I am thrilled. Now to get this pain under control.

Post 7) Endo said we can do whatever I can tolerate. I am now doing 20/20/10 instead of 20/10/10. I am still in pain, but it’s a little more tolerable. She said if I am just miserable and can’t take the pain, then I can do a bedtime dose. I am going to try melatonin to help me sleep per her suggestion. She wants to see how I do on this new dose and start a slow wean in a few weeks.

Post 8) Things have been getting better by the week. New years day was my best physical and mental day so far. I can actually feel my old self returning! !! Today I have lots of bone/muscle pain. Its better than a few weeks ago by far. Yesterday I was able to enjoy my son and play with him for the first time in a long time. I could even dance a little with him. He was so happy. I am down to 20/17.5/10& am handling it well. The pain is tolerable. My hump is almost gone, my stomach is mushy and shrinking, skin is peeling and improving, hair is growing in normally. I will be six weeks out this Wed.