NH Rare Disorders Collaborative

NH Rare Disorders Collaborative Enabling connection, education, and advocacy across rare disorder and patient support groups in NH.

I will be speaking and volunteering at  Freedom Summit in 2 days! Let me know in the comments any topics you want me to ...
08/18/2026

I will be speaking and volunteering at Freedom Summit in 2 days! Let me know in the comments any topics you want me to address to these leaders in the BioTech World!

A two-day summit Aug 20–21, 2026 in Manchester NH for people serious about rewriting the rules across biotech, energy, housing, startups, and community.

Imagine if we had this in NH!
08/10/2026

Imagine if we had this in NH!

Genetic testing is helping doctors identify rare diseases earlier, opening the door to treatment options before symptoms appear.

NH Rare parents Kurt Oberhausen of Northfield w/ Daughter Addison (7) & RDAC Member Melanie Zalman of Jaffrey w/ Daughte...
08/10/2026

NH Rare parents Kurt Oberhausen of Northfield w/ Daughter Addison (7) & RDAC Member Melanie Zalman of Jaffrey w/ Daughter Josephine (😎 met today with Congresswoman Maggie Goodlander as a part of Everylife Foundation for Rare Disease's program Rare Across America. Rare Across America is the opportunity for everyday constituents to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing their stories across the country. Thank you Oberhausen & Zalman families for making time to share your stories and advance the needs of NH's rare constituents through this amazing nationwide program!

FYI. IF YOU ARE LOOKING FOR GENETIC TESTING, THIS COMPANY MAYBE ABLE TO HELP.
08/02/2026

FYI. IF YOU ARE LOOKING FOR GENETIC TESTING, THIS COMPANY MAYBE ABLE TO HELP.

Free DNA tests for thousands of variants related to rare disease. No credit cards, no appointments, and no insurance necessary. Take our quiz to see if you qualify!

I know some on here are from Maine.  The EDS Society is looking for someone from Maine to join this event in DC.
07/31/2026

I know some on here are from Maine. The EDS Society is looking for someone from Maine to join this event in DC.

People with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often face delayed diagnoses, limited access to knowledgeable care, financial strain, and a lack of understanding across healthcare systems.

07/29/2026

Please consider filling out it this survey.

We Need Your Help

If your child or loved one has been impacted by reductions, denials, delays, or other changes to Private Duty Nursing (PDN), Home Health Nursing, Skilled Nursing, Licensed Nursing Assistant (LNA) services, Personal Care Services (PCS/PCA), Medicaid-funded in New Hampshire, we need to hear from you.

Our coalition has created a confidential survey to document what families are experiencing across the state. The information we collect will help us identify trends and provide accurate data to legislators, DHHS, state leaders, and the media as we advocate for medically necessary home-based care.

Whether your services were:

β€’ Reduced

β€’ Denied

β€’ Delayed

β€’ Not staffed despite authorization

β€’ Difficult to obtain or maintain

β€’ Or otherwise disrupted

Your story matters.

Every response helps us demonstrate the real impact these decisions are having on medically complex children, adults with disabilities, and the families who care for them.

Please complete the survey here:

[https://forms.gle/apt8tQyTaLdY1UTv7](https://forms.gle/apt8tQyTaLdY1UTv7?fbclid=IwZXh0bgNhZW0CMTAAYnJpZBExYVBsS05YanFxcVQ3S2pac3NydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR68jxTnc__ucCJZFJDI0xCV5nWjeB6FYMpB45smlkOfuuPtszVzfr0JwVgsRw_aem_IT42xwrzAisbb7BCcaPZ7A)

Please also share this post with other New Hampshire families who may have been affected. The more data we collect, the stronger our advocacy becomes.

Together, we can help ensure New Hampshire families receive the home-based care they need to safely remain where they belong.

NH Families for Home Nursing

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07/29/2026

Latest update on Nursing cuts. I am sharing from NH Families for Home Nursing page.

πŸ’™ COALITION UPDATE β€” July 29, 2026
NH Families for Home Nursing
WE MADE THE NEWS β€” AND THE STATE IS TAKING ACTION.
Today, the Manchester Union Leader published a story by Kevin Landrigan covering our coalition and the fight to restore home nursing hours for New Hampshire's most medically complex children and young adults. This is a major milestone for our families and a testament to the courage of every parent who has spoken up.
The article makes clear what our coalition has been saying all along: the Managed Care Organizations β€” AmeriHealth Caritas NH, WellSense Health Plan, and NH Healthy Families β€” began cutting or eliminating Private Duty Nursing and Licensed Nursing Assistant hours last spring, often without warning and without adequate clinical justification. This is a state-level problem, not a federal one, and the state is responding.
WHAT STATE OFFICIALS ARE SAYING AND DOING
Executive Councilor Janet Stevens has been fighting hard for our families and is not stopping. She has praised DHHS Medicaid Director Henry Lipman and Chief Medical Officer Dr. Jonathan Ballard for responding to families' concerns with immediate action. DHHS spokesman Jake Leon confirmed the agency has been proactively working to help affected families, stating: "The department has been aware of these concerns and had already begun taking immediate action directing MCOs to restore services. Building on improvements already made, the Department will institute additional safeguards to strengthen oversight of MCO authorization of services for the most vulnerable children in our program."
Councilor Stevens is scheduled to address the Executive Council at their meeting this Wednesday at Nashua Community College, where she plans to urge DHHS to implement an immediate moratorium on further reductions to nursing and home health services until the agency has verified that each MCO complied with all necessary requirements before making any change. As Councilor Stevens has made clear: "The Katie Beckett program began with a simple premise: every child deserves to grow up in a home, not a hospital bed. We owe it to these children and to their families to fulfill this premise."
She is also calling for an accelerated independent investigation outside the MCO purview into all service reductions for Katie Beckett and APTD recipients β€” including those who transitioned to the adult APTD program after turning 18.
AN IMPORTANT REALITY CHECK
While some families have seen their hours formally restored on paper, Councilor Stevens has been clear-eyed about what that means in practice: "Unfortunately, restoration on paper has not solved the underlying problem: a statewide staffing shortage means many of these families are losing the very providers who cared for their children for years, even as their hours are formally reinstated." Paper restoration is a first step β€” not a finish line. We will not stop until every family has both the authorized hours and the qualified providers to fill them.
It is also worth noting that of the three MCOs, only AmeriHealth Caritas NH responded to the Union Leader's request for comment β€” and their response was simply: "Thanks for reaching out. We have nothing to add at this time." WellSense and NH Healthy Families did not respond at all. That silence speaks volumes.
IF YOU HAVE NOT YET BEEN HEARD, PLEASE REACH OUT NOW
The Executive Council meets this Wednesday. Your story still matters. Please contact these key officials directly if you have not already done so:
Henry Lipman, Director of NH Medicaid Services, DHHS
Henry is the state's lead on Medicaid and has the direct authority to hold the MCOs accountable. If your family has experienced reductions to PDN, LNA, or PCA hours, please email him directly and make sure your situation is documented.
πŸ“§ [email protected]
πŸ“ž (603) 271-9434
Vernon Clough, Administrator of NH Medicaid Services
πŸ“§ [email protected]
πŸ“ž (603) 271-9423
This issue affects families whose PDN, LNA, and PCA hours have been reduced or eliminated through AmeriHealth Caritas NH, WellSense, or NH Healthy Families. If that is your family, please make sure your situation is documented with both offices above before Wednesday's Executive Council meeting.
Please share this post and the Union Leader article as widely as you can. Every share is another family, another provider, another community member who learns what is happening and joins our fight.
Our coalition is growing. Our voices are being heard. And Wednesday is our next opportunity to make sure the state follows through.
πŸ’™ NH Families for Home Nursing

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Concord, NH

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