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Mashup Score: 0Financial Assistance For Patients With Rare Diseases | NORD - 9 month(s) ago
Patient Assistance Programs that can help patients afforddrugs, offer medical assistance, and help pay medical bills.
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0RareCare - National Organization for Rare Disorders - 10 month(s) ago
NORD’s Patient Assistance Programs Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists. …
Categories: Latest Headlines, Rare DiseaseTweet-
NORD is proud to offer the @WMIWMF Travel & Lodging Assistance Program! This program helps pay for travel to medical appointments & clinical trials for #WaldenstromsMacroglobulinemia. Apply by phone, email or online here: https://t.co/4c3vNNyMhd #Waldenstroms #Macroglobulinemia https://t.co/70q2JkMpLL
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Mashup Score: 1Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community - National Organization for Rare Disorders - 10 month(s) ago
Today, the Centers for Medicare and Medicaid Services (CMS) finalized a key component of the Inflation Reduction Act’s Medicare Drug Price Negotiation Program
Categories: Latest Headlines, Rare DiseaseTweet-
New #InflationReductionAct guidance from @CMSGov threatens #RareDisease drug development. Check out NORD’s statement on today's finalized guidance on the Medicare Drug Price Negotiation Program: https://t.co/7cMHX33Esu https://t.co/5Zkqn8oMp5
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Mashup Score: 0Cleveland Clinic Center for Rare Diseases - National Organization for Rare Disorders - 10 month(s) ago
Director(s): Julie Kaplan, MD, Daniel Sullivan, MD Contact information Cleveland Clinic National Consultation Service Serves children and adults This is the preferred number for making an appointment. May require a referral from a doctor. …
Categories: Hem/Oncs, Latest HeadlinesTweet-
Congratulations to the Rare Cancers and Blood Disease Program under the leadership of @MukherzSudipto @ClevelandClinic for achieving the Center of Excellence status!! https://t.co/K3XuYc3XPo @RareDiseases @CarrawayHetty @ShepardDale @CleClinicMD https://t.co/8HtQQ9ZrxL
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Mashup Score: 0
WASHINGTON, DC, and ALBANY, N.Y., June 27, 2023 – The Galactosemia Foundation and the National Organization for Rare Disorders (NORD)® today announced they
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We are proud to share, in partnership with @GalactosemiaFDN, the #galactosemia community’s first Voice of the Patient Report. See what patients and caregivers say are their largest burdens and unmet treatment needs. #ThisIsGalactosemia Read it here: https://t.co/zK0I1jv4os
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Mashup Score: 0Take Action - National Organization for Rare Disorders - 10 month(s) ago
Copyright ©2023 NORD – National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical…
Categories: Latest Headlines, Rare DiseaseTweet-
Take action! We’re joining other advocacy groups urging the @EdWorkforceCmte to put patients first and mark up the #SafeStepAct #HR2630 in July. This will give #RareDisease patients access to the treatments they need sooner. Email your representative now: https://t.co/htmcj6meR5 https://t.co/WAFyqt6zIw
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Mashup Score: 1Trans and Rare: How my experience as a trans patient prepared me to navigate health care as a rare disease patient - National Organization for Rare Disorders - 10 month(s) ago
By yannick-robin eike mirko
Categories: Latest Headlines, Rare DiseaseTweet-
If you're struggling to understand the link between #Pride and rare diseases, this story by artist @mirkoyannick (they/he) with #FactorVIIDeficiency makes clear how much #trans and rare patients have in common. Read yannick-robin's powerful blog post: https://t.co/pqo4GVYsJP https://t.co/ikSZ5GJ8m3
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Mashup Score: 0Father & Daughter Interview: The Legacy of Running for Rare from the Perspective of the Family Who Started It All - National Organization for Rare Disorders - 10 month(s) ago
Phillip, you were just honored at NORD’s Rare Impact Awards as the “Father of Running for Rare.” In your words, how did Running for Rare get started?
Categories: Latest Headlines, Rare DiseaseTweet-
We sat with runner-advocates Phillip Maderia and his daughter, Abby, to discuss #FathersDay plans, the creation of #Running4Rare, how to become a runner with a purpose, growing up as a #RareDisease ally, and Phillip's pearls of wisdom. Read our interview: https://t.co/rOkhyhSZxq
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Mashup Score: 1From Life-Changing Clinical Trials to Running for Rare: Justin’s Journey as a Rare Disease Father - National Organization for Rare Disorders - 10 month(s) ago
By Justin H.
Categories: Latest Headlines, Rare DiseaseTweet-
For #FathersDay tomorrow, we spoke to Justin, father to Garrett who has an #ASMD diagnosis. He reflects on Garrett's participation in #ClinicalTrials for a life-changing treatment, and offers advice to parents in similar positions. Read from Justin here: https://t.co/DkvIZYpRUm https://t.co/D12ZLJ7jEo
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Mashup Score: 0When Chemo Leads to Gender Euphoria: My Journey to Queer Joy - National Organization for Rare Disorders - 11 month(s) ago
By Rebekah P. (she/they)
Categories: Latest Headlines, Rare DiseaseTweet-
All #PrideMonth long, we're sharing stories from our community on their #LGBTQIA and #RareDisease journeys!🌈 Rebekah shares how #RareCancer treatment led to a better understanding of her gender, and the impact religion had on her journey. Read her story: https://t.co/njwfV4t9fC https://t.co/ZKtExwQiUp
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NORD is proud offer Avery's Hope, our Rare Pediatric GI Assistance Program! Get financial support for healthcare costs related to the care of a rare GI diagnosis. Apply online: https://t.co/PtgcB6RI3J For more information, contact RarePedGI@rarediseases.org or 203-896-7261. https://t.co/GAuNYEPKb2