Your Specialist Report — Idiopathic Multicentric Castleman Disease (iMCD)

Prepared for: R.M. (sample patient, age 45) · Location: Atlanta, Georgia · Report date: November 1, 2026

1. What this condition is

Idiopathic multicentric Castleman disease (iMCD) is a rare immune system condition. Lymph nodes swell in several parts of the body, and the immune system releases too many inflammation signals (called cytokines, such as IL-6). This can cause fevers, night sweats, tiredness, fluid build-up, and strain on the kidneys, liver or blood counts. "Idiopathic" means no cause has been found, and the HHV-8 virus is not the trigger. Care is usually led by a hematologist (blood specialist) with Castleman experience. It is long-term care: a first plan, close blood tests in the first weeks to see if it works, a backup plan if it does not, and regular check-ups after that. Many families have the expert center direct the plan while a hematologist near home gives infusions and checks labs. Your doctors will decide what applies to you; this report helps you prepare for those conversations.

2. Specialists to consider

Below are three doctors at three of the four U.S. sites that the Castleman Disease Collaborative Network (CDCN, the main patient and research nonprofit for this disease) marks as a "Center of Excellence" on its physician map. We checked that map on November 1, 2026. CDCN does not publish the rules for that label.

What CDCN already gives you, and what this report adds. CDCN's physician map and referral list are open to patients who sign up on its website (we saw no fee). This report adds: each doctor's own hospital page checked on November 1, 2026; out-of-date CDCN entries caught (Dr. Voorhees, Dr. Mehta); an order based on how directly each hospital page ties the doctor to Castleman disease, then distance; what each center offers a family in Atlanta; and an open trial and a registry you can join from home.

1. Frits van Rhee, MD, PhD — Hematologist/Oncologist; Clinical Director, UAMS Myeloma Center

• Where they practice now: University of Arkansas for Medical Sciences (UAMS), Little Rock, Arkansas. Checked on the hospital's own page on November 1, 2026: Frits van Rhee, M.D., Ph.D. | UAMS Health
• Why selected:
• His UAMS page lists Castleman disease among conditions he treats. It calls him "an international expert on Castleman Disease, with one of the largest populations of Castleman Disease patients in the world." That is the hospital's own claim.
• He led the international iMCD treatment guidelines (Blood, 2018). He helped start CDCN.
• Two of the patient stories in Section 4 describe going to him in Little Rock.
• Little Rock is about 8 hours from Atlanta by car, or a short flight.
• Seeing patients now: his UAMS page shows patient reviews dated July 31 to August 28, 2026.
• Accepting new patients: Yes, stated on the page (adults). His page also says he sees patients who want an expert review of a plan made by another doctor.

2. Joshua Brandstadter, MD, PhD, MSc — Director of Clinical Research, Center for Cytokine Storm Treatment & Laboratory (Penn's Castleman center)

• Where they practice now: Penn Medicine, Abramson Cancer Center (Perelman Center), Philadelphia, Pennsylvania. Checked on the hospital's own page on November 1, 2026: Joshua Daniel Brandstadter, MD, PhD, MSc | Penn Medicine
• Why selected:
• His Penn page says he "cares for patients with lymphoma and rare blood disorders, particularly Castleman Disease." It lists several Castleman research papers from 2026.
• He leads two Penn studies:
• a ruxolitinib trial. It is for adults ages 18 to 80 whose iMCD did not respond to anti-IL-6 medicine (siltuximab or tocilizumab), came back on it, or who could not take it. The trial was recruiting as of April 2026 (trial record NCT07085039).
• the ACCELERATE registry, a study you can join from home by sharing your medical records (trial record NCT02817997).
• Same clinic, second option: Sunita Nasta, MD, Lymphoma Section Chief. Her Penn page calls her "a regional/national expert in the management of patients with Castleman disorder" and says she is accepting new patients. Patient reviews on her page are dated September 2026.
• Philadelphia is about a 2-hour flight from Atlanta.
• Seeing patients now: his Penn page shows patient reviews dated May and July 2026.
• Accepting new patients: Yes, stated on the page.

3. Peter Voorhees, MD — Hematology and Medical Oncology (the regional option)

• Where they practice now: Atrium Health Levine Cancer Institute, Charlotte, North Carolina. Checked on the hospital's own page on November 1, 2026: Peter Voorhees, MD | Hematology & Medical Oncology | Atrium Health
• Why he is third: his Atrium page lists hematology and oncology but does not name Castleman disease. Most of his recent work is on multiple myeloma (a different blood disease). For a rare disease, that is a real gap, so we placed him after the two doctors whose own pages name Castleman.
• Why he is still listed:
• He is the closest Center of Excellence to Atlanta, about 4 hours by car. CDCN's map links to this exact Charlotte clinic for him.
• He co-wrote the international iMCD treatment guidelines (Blood, 2018).
• If you need frequent visits, driving distance may matter. Ask the clinic how many iMCD patients he sees.
• CDCN's advisory board page still lists him at the University of North Carolina, which is out of date; the Atrium page and CDCN's map place him in Charlotte.
• Seeing patients now: his Atrium page shows patient reviews dated August 31, 2026.
• Accepting new patients: Yes, stated on the page. The page says he treats adults only and offers in-person visits only.

Closer to home (Georgia): a research lead, not a confirmed Castleman clinic

Mary Jo Lechowicz, MD — Professor, Hematology and Medical Oncology, Emory Winship Cancer Institute, Atlanta. Checked on Emory Healthcare's page and Emory's faculty page on November 1, 2026.

• Her tie to iMCD is research. She sits on CDCN's Scientific Advisory Board, co-wrote the 2018 iMCD guidelines, and her faculty page lists iMCD papers from 2024, 2025 and September 2026.
• Her clinical page does not mention Castleman disease. It describes blood cancers, especially virus-related and T-cell lymphoma. We cannot say she treats iMCD patients.
• How she may help: as a local hematology contact. Ask whether she sees adults with iMCD, or could give infusions and check labs in Atlanta while one of the centers above directs the plan.
• Seeing patients now: reviews dated September 15 and September 25, 2026; telehealth visits are available.

We found no CDCN-mapped adult Castleman physician in Georgia; the only Atlanta pin is a children's hospital. If you start with a local hematologist, ask how many iMCD patients they have treated.

Leads we checked and did not list

• Amit (Amitkumar) Mehta, MD: CDCN's map still shows him at UAB in Birmingham, Alabama, which would be the closest pin to Atlanta. But Mayo Clinic's own page now lists him in Phoenix, Arizona, in its CAR-T and bone marrow transplant groups, with his training and a 2025 degree from UAB. It lists lymphoma conditions, not Castleman disease. So the Birmingham listing is out of date.
• Angela Dispenzieri, MD (Mayo Clinic, Rochester, Minnesota): current; her Mayo page lists Castleman disease, and she co-wrote the 2018 guidelines. Left off only because three Centers of Excellence are closer. Appointments: 507-792-8777.
• David Fajgenbaum, MD (Penn): CDCN co-founder and an iMCD patient himself. His Penn faculty page (last updated 05/29/2026) lists him "(on leave)", as President of Every Cure and of CDCN, with no clinic contact.
• Shan Chandrakasan, MD (Children's Healthcare of Atlanta): on CDCN's map, but a children's doctor.
• Lubomir Sokol, MD (Moffitt, Tampa): on CDCN's map; his Moffitt page lists lymphoma only, not Castleman disease.
• Carla Casulo, MD (University of Rochester, New York): the fourth Center of Excellence; not checked in detail because it is farther.
• Atlanta names from online ranking directories: not confirmed on Emory's own pages as treating Castleman disease.

3. Next steps

How to reach each specialist (from each institution's own page, checked November 1, 2026):

• UAMS Myeloma Center (Dr. van Rhee):
• Phone: new appointments 501-686-7105, or Myeloma Center intake toll-free 1-888-693-5662 (Mon–Fri, 8 a.m.–5 p.m. Central)
• Online: secure web form on the appointments page
• Referral needed: no. The page says "No referral necessary."
• Wait: the center says new patient visits are "typically scheduled within two weeks." That is the center's own figure.
• From a distance: the center says it has seen patients from every U.S. state. Neither page mentions video visits or mailing records. It says it sends visit reports to your referring doctor regularly, and that doctor can follow your records through its secure portal (EpicCare Link).
• Lodging: UAMS lists on-campus rooms and hotel discounts ("ask for the UAMS discount"). Home for Healing offers affordable rooms for people in cancer treatment and their caregivers, by social worker referral; ask whether a Castleman patient qualifies.
• Tip: the intake page talks mainly about myeloma. Say clearly that you are calling for Dr. van Rhee's Castleman clinic.
• Penn Medicine (Dr. Brandstadter or Dr. Nasta):
• Phone: 215-615-5858 (both doctors' pages). Penn's Castleman center office: 215-614-0935 (center page).
• Insurance: Dr. Brandstadter's page lists 36 accepted plans, including Aetna and Cigna. Check yours.
• From a distance: neither doctor's page mentions video visits, and we found no current Penn page on lodging for out-of-state patients. Ask (question 3 below). The ACCELERATE registry is joined from home.
• Ruxolitinib trial: Bridget Austin, 267-586-9977, as listed by Penn in the U.S. trial registry.
• ACCELERATE registry: 215-614-0209 or accelerate@uphs.upenn.edu (CDCN registry page)
• Atrium Health Levine Cancer Institute (Dr. Voorhees):
• Phone: new patients call 980-442-4363
• Online: "Schedule an appointment" on his Atrium page
• Telehealth: no, in-person visits only (stated on the page)
• Emory Winship (Dr. Lechowicz):
• Phone: (404) 778-0519; Winship main line 404-778-1900
• Telehealth: yes, stated on the page
• CDCN patient support: 610-304-0696 or info@castlemannetwork.org (CDCN contact page).
• Travel help: CDCN states it gives no financial assistance, but lists a partner, Angel Flight East, which arranges free flights for medically stable patients. That group flies within the Northeast; for trips starting in other states, its flight page points to the Air Care Alliance.

Your first call — three questions
The wait and referral rules are not stated on the Penn, Atrium or Emory pages, Dr. Lechowicz's page does not say whether she takes new patients, and no center's page explains mailed records, video visits from Georgia, or (except UAMS) lodging. Ask on the first call:
1. Is Dr. [name] seeing new patients with iMCD, and what is the current wait for a first visit?
2. Do you need a referral from my doctor?
3. Can you review biopsy slides, lab results and scans I mail before I travel? Can follow-ups be video visits to Georgia? Do you help out-of-state families with lodging?

Your 3 steps this week:

1. Ask your current doctor's office to send you copies of these records:
2. the lymph node biopsy pathology report, and a request that the lab hold the tissue block and slides so an expert can re-check them
3. all blood test results: blood counts, CRP, albumin, kidney and liver tests, and IL-6, VEGF, HHV-8 and HIV tests if done
4. the CT or PET scan reports, plus the image files on a disc or secure link
5. the notes from your visits
6. Call or email two of the specialists above. One way to choose: Dr. van Rhee or Penn for Castleman depth, and Dr. Voorhees if being within driving distance matters to you. Use the three questions in the box above, and add: can a hematologist in Atlanta give treatments and check labs while you direct the plan?
7. Call your insurer and ask:
8. Are UAMS (Arkansas), Penn Medicine (Pennsylvania) and Atrium Health (North Carolina) in network, and what does an out-of-network visit cost?
9. If siltuximab (Sylvant) or tocilizumab is prescribed, does each infusion need prior authorization? Is it covered at an Atlanta infusion clinic when the plan comes from an out-of-state center?
10. Then ask the specialist and your Atlanta hematologist: who orders the infusions, who submits the prior authorization, and whose office bills for them?
11. Drug-maker help: CDCN's resources page links the Recordati Rare Diseases Patient Liaison program for people on siltuximab ("one-on-one support at ZERO additional cost"). For tocilizumab (Actemra, a Genentech medicine), Genentech Access Solutions, (877) 436-3683, says it works with your doctor's office and health plan to help you get the medicine.

4. Stories from families who have been there

1. Patient interview on a patient-community site (Patient Worthy, July 2024): Carl G.
2. Local doctors told Carl he needed chemotherapy and might live about two years.
3. He emailed the Castleman expert in Little Rock at 10:30 at night and got a phone call back 15 minutes later.
4. He flew to Little Rock and became the third person in the trial of siltuximab (an anti-IL-6 medicine). His symptoms eased within his first three treatments.
5. Years later he lives a fairly normal life with an infusion every third week. His doctor cannot say whether he is cured.
6. Tone: grateful and strongly pro-self-advocacy. This is one very good result, not a typical one. Read it
7. A patient's own talk (TED, April 2025): David Fajgenbaum.
8. He is a doctor who has iMCD himself. He is also founding director of Penn's Castleman center and president of CDCN, so he is not a neutral voice.
9. At 25, in 2010, he was read his last rites. With no approved treatment, he got seven chemotherapies not made for his disease. They worked, then the disease kept coming back: he nearly died five times in three years.
10. Studying his own blood, he found a transplant drug (sirolimus) that had never been used for this disease. He says he has been in remission for over 11 years.
11. He also describes another iMCD patient for whom his treatments did not work, who was close to hospice before a different drug helped.
12. Tone: hopeful but honest about how close it came. Watch or read the transcript
13. Patient profile on the CDCN website (undated): Victoria Humphries.
14. Her form was iMCD with TAFRO, a severe type. The first doctor did not know the disease well.
15. She was back in the hospital before she could see a specialist.
16. Since then she has had blood and platelet transfusions, five weeks of dialysis, sepsis, about 90 pounds of fluid build-up and muscle loss. She also struggles at times with depression and anxiety.
17. The profile says the disease "has really hindered her quality of life" and gives no clear end point.
18. Tone: hard and ongoing. Read it

• Hard outcomes: we found no first-person account of a death. CDCN's registry page does quote the partner of Emmanuel "Manny" Morales, a patient who died, without details. These stories come from people well enough or connected enough to share. Ask your specialist about results for patients like you.

5. Ready-to-send messages

Email to the specialist's office (copy, fill the brackets, send):

Subject: New patient request — idiopathic multicentric Castleman disease (iMCD) — records review
Hello, I am writing about myself. I was recently told I have idiopathic multicentric Castleman disease (iMCD). I am 45 and live in Atlanta, Georgia.
Dr. [van Rhee / Brandstadter / Voorhees]'s experience with Castleman disease is why I am contacting your program. Could you tell me:
(1) whether Dr. [name] is seeing new patients with iMCD, (2) the current wait for a first visit,
(3) whether a referral is needed, and (4) how to send my biopsy slides, lab results and scan images for review before a visit?
I would also like to know whether a hematologist near Atlanta could give treatments and check labs while your team directs my plan.
My insurance is [plan name, PPO, member ID]. Thank you, [name, phone]

Phone script (what to say in the first 30 seconds): "Hi, I'm calling to request a new patient appointment with Dr. [name] for idiopathic multicentric Castleman disease. Is Dr. [name] currently seeing new patients with this condition? What's the wait? Do you need a referral, and how do I send my biopsy slides, lab results and scans?" Write down: the person's name, the date, the answer, the next step.

6. One-page summary to bring to the appointment

Name: ____________ Date of birth: ____________ Phone: ____________ Condition: idiopathic multicentric Castleman disease (iMCD). Date I was told: ____________ By whom: ____________ Biopsy: which lymph node, date, hospital: ____________ Where the slides and tissue block are now: ____________ Key test results (fill in from your copies):

• CRP: ______ Hemoglobin: ______ Platelets: ______ Albumin: ______
• Kidney (creatinine): ______ Liver tests: ______
• IL-6 / VEGF (if done): ______ HHV-8 test: ______ HIV test: ______
• Scans (CT/PET) date and main finding: ____________

Symptoms now: fevers / night sweats / tiredness / swelling / weight loss / shortness of breath (circle) · Since when: ______ Current medicines and doses: ____________ Allergies: ____________ My local doctors (name, phone): ____________ The 3 questions that matter most to me today:

1. ____________
2. ____________
3. ____________

What I want from this visit: (for example: a clear plan, a backup plan, and who manages my care in Atlanta) ____________

7. Questions to ask the specialist

1. How many patients with iMCD do you personally treat each year? And your team?
2. What results do you see for patients like me, in the first months and after a few years?
3. How long is the wait for a first visit, and can you review my records before I travel?
4. Has my biopsy been reviewed by a pathologist with Castleman experience? Do my results meet the international iMCD criteria? Should my slides be re-checked?
5. Which look-alike conditions have been ruled out (HHV-8 infection, HIV, lymphoma, autoimmune disease, IgG4-related disease, POEMS syndrome)? Is any test still missing?
6. Is my disease the severe TAFRO type or not, and what does that change?
7. Penn's research page says the one FDA-approved medicine for iMCD helps about one-third of patients. How will we know in the first weeks whether my treatment is working? Which blood tests will we track? What is the plan if it does not work?
8. Am I a fit for a clinical trial now or later (for example, Penn's ruxolitinib trial)? Should I join the ACCELERATE registry?
9. How often would I need to come to your center? Can a hematologist in Atlanta give infusions and check labs, with your team directing the plan?
10. What should I know about infections and vaccines while on treatment?
11. What warning signs should make me call you or go to the ER (high fever, fast swelling, shortness of breath, much less urine, bleeding or bruising)?

8. Your support after this report

• 14 days of email questions about this report: reply to the delivery email.
• Day-30 check-in: we email you. If you could not get an appointment with any listed specialist, we research new options at no charge.
• Not helpful? Tell us within 7 days and we redo the research once at no charge; if it still doesn't help, we refund you in full.

This report is general information to help you find and talk to specialists. It is not medical advice, does not identify or confirm any condition, and does not recommend a treatment. Treatment decisions belong to you and your doctors. No doctor or hospital pays to be included in this report. The patient in this sample report is fictional; the specialists, pages and stories are real and were checked on November 1, 2026.