Waldenstrom’s Macroglobulinemia

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15Specialists8Treatment centers6Financial resources

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UniteRare data is compiled from authoritative primary sources (FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, NORD), then processed through automated and AI-assisted extraction pipelines.
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What is Waldenstrom’s Macroglobulinemia?

Waldenstrom’s Macroglobulinemia is treated with 1 medication in our database, including Imbruvica. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Pharmacyclics. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Waldenstrom’s Macroglobulinemia treatment below.

Inheritance
Multifactorial
Caused by a mix of several genes and environmental factors
Age of Onset
Late onset
Begins later in life, typically after age 50
NORD ↗

Treatments

0 FDA-approved · 1 other tracked

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

Other tracked therapies (1)

Medications tracked in our therapeutics database that are not FDA-approved for Waldenstrom’s Macroglobulinemia via a labelled indication. May include investigational, off-label, or supportive therapies. Always verify with a clinician before use.

Imbruvica

Ibrutinib· PharmacyclicsNot FDA-labelled for Waldenstrom’s Macroglobulinemia

* Patient Copay Amount: As little as $0 per prescription * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Available to patients with commercial insurance coverag

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

No actively recruiting trials found for Waldenstrom’s Macroglobulinemia at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Waldenstrom’s Macroglobulinemia community →

Specialists

15 foundView all specialists →

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

MM
Monique C Minnema
Specialist

Specialty unconfirmed

University Medical Center Utrecht

Last updated · Apr 20262 Waldenstrom’s Macroglobulinemia publications
MP
M Lia Palomba
Specialist

Specialty unconfirmed

Memorial Sloan Kettering Cancer Center

Last updated · Apr 20262 Waldenstrom’s Macroglobulinemia publications
OT
Olivier Tournilhac
Specialist

Specialty unconfirmed

Centre Hospitalier Universitaire (CHU)

Last updated · Apr 2026PI on 1 active trial2 Waldenstrom’s Macroglobulinemia publications
AG
Alexander Grunenberg
Specialist

Specialty unconfirmed

University Hospital Ulm

Last updated · Apr 20262 Waldenstrom’s Macroglobulinemia publications
MV
Marzia Varettoni
Specialist

Specialty unconfirmed

Fondazione IRCCS Policlinico San Matteo

Last updated · Apr 2026PI on 1 active trial3 Waldenstrom’s Macroglobulinemia publications
EK
Eva Kimby
Specialist

Specialty unconfirmed

Karolinska Institute

Last updated · Apr 20262 Waldenstrom’s Macroglobulinemia publications
ET
Evangelos Terpos
Specialist

Specialty unconfirmed

linical Therapeutics

Last updated · Apr 20262 Waldenstrom’s Macroglobulinemia publications
CP
Christopher J Patterson
Specialist

Specialty unconfirmed

Dana Farber Cancer Institute; and Harvard Medical School

Last updated · Apr 20264 Waldenstrom’s Macroglobulinemia publications
RG
Ramon Garcia-Sanz
Specialist

Specialty unconfirmed

University Hospital of Salamanca

Last updated · Apr 20263 Waldenstrom’s Macroglobulinemia publications
PM
Pierre Morel
Specialist

Specialty unconfirmed

University Hospital Amiens- Picardie

Last updated · Apr 20263 Waldenstrom’s Macroglobulinemia publications
JM
Jeffrey V Matous, MD
DENVER, CO
Specialist

Specialty unconfirmed

Plasma Cell Diseases Group Colorado Blood Cancer Institute

Last updated · Apr 20264 Waldenstrom’s Macroglobulinemia publications
RG
Ramón García-Sanz
Specialist

Specialty unconfirmed

University Hospital of Salamanca

Last updated · Apr 20263 Waldenstrom’s Macroglobulinemia publications
LQ
Lugui Qiu
Specialist

Specialty unconfirmed

National Clinical Research Center for Blood Diseases

Last updated · Apr 2026PI on 3 active trials3 Waldenstrom’s Macroglobulinemia publications
JS
Jesus San-Miguel
Specialist

Specialty unconfirmed

Clínica Universidad de Navarra

2 Waldenstrom’s Macroglobulinemia publications
VL
Veronique Leblond
Specialist

Specialty unconfirmed

Département d'Hématologie Hôpital Pitié-Salpêtrière AP-HP

3 Waldenstrom’s Macroglobulinemia publications

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

6 grants

NORD/IWMF Patient Assistance Program

National Organization for Rare Disorders (NORD), International Waldenstrom's Macroglobulinemia Foundation (IWMF)

Apply ↗

IMBRUVICA By Your Side

Apply ↗

PAN Foundation Waldenstrom Macroglobulinemia Disease Fund

PAN Foundation

Apply ↗

PAN Foundation Waldenstrom Macroglobulinemia Financial Assistance

PAN Foundation

Apply ↗

myBeOne Support Program

Apply ↗

NORD Rare Disease Educational Support Program / Travel & Lodging Assistance Program

National Organization for Rare Disorders (NORD), International Waldenstrom's Macroglobulinemia Foundation (IWMF)

Apply ↗

Community

Open Waldenstrom’s MacroglobulinemiaForum →

No community posts yet. Be the first to share your experience with Waldenstrom’s Macroglobulinemia.

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Latest news about Waldenstrom’s Macroglobulinemia

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

No recent news articles for Waldenstrom’s Macroglobulinemia.

Follow this condition to be notified when news becomes available.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Waldenstrom’s Macroglobulinemia

What is Waldenstrom’s Macroglobulinemia?

Waldenstrom’s Macroglobulinemia is treated with 1 medication in our database, including Imbruvica. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Pharmacyclics. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Waldenstrom’s Macroglobulinemia treatment below.

How is Waldenstrom’s Macroglobulinemia inherited?

Waldenstrom’s Macroglobulinemia follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Waldenstrom’s Macroglobulinemia typically begin?

Typical onset of Waldenstrom’s Macroglobulinemia is late onset. Age of onset can vary across affected individuals.

Which specialists treat Waldenstrom’s Macroglobulinemia?

15 specialists and care centers treating Waldenstrom’s Macroglobulinemia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Waldenstrom’s Macroglobulinemia?

1 FDA-approved treatment are currently tracked on UniteRare for Waldenstrom’s Macroglobulinemia. See the treatments and support programs sections for copay assistance, eligibility, and contact details.

Frequently asked questions about Waldenstrom’s Macroglobulinemia

Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.

  1. What is Waldenstrom’s Macroglobulinemia?

    Waldenstrom’s Macroglobulinemia is a rare disease catalogued in international rare-disease ontologies. It is typically inherited as multifactorial. Age of onset is generally late onset. For verified primary sources, see the UniteRare Waldenstrom’s Macroglobulinemia page.

  2. How is Waldenstrom’s Macroglobulinemia inherited?

    Waldenstrom’s Macroglobulinemia follows multifactorial inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.

  3. Are there FDA-approved treatments for Waldenstrom’s Macroglobulinemia?

    Yes — UniteRare tracks 1 FDA-approved treatment with indications relevant to Waldenstrom’s Macroglobulinemia. Each entry includes prescribing information, orphan-drug-designation status where applicable, and the FDA application number for verification.

  4. Are there clinical trials for Waldenstrom’s Macroglobulinemia?

    Active clinical trials for Waldenstrom’s Macroglobulinemia are tracked daily from ClinicalTrials.gov. Trial availability changes frequently; check the UniteRare trial listings for the current count and recruitment status. Sponsors of rare-disease research often welcome inquiries even when a trial is not actively recruiting at a given moment.

  5. How do I find a specialist for Waldenstrom’s Macroglobulinemia?

    UniteRare lists 15 verified clinicians with documented expertise in Waldenstrom’s Macroglobulinemia, sourced from ClinicalTrials.gov principal-investigator records, PubMed publication histories, and the NPPES NPI registry. Filter by state or browse our state-specific specialist pages for nearby options.

See full Waldenstrom’s Macroglobulinemia page for complete clinical details, sources, and verified-specialist listings.

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