NH Rare Disorders Collaborative

NH Rare Disease Advisory Council will be meeting on Friday, September 25th at 10 am. (This is a rescheduled meeting)

The link to teams meeting is on the landing page at DHHS.

We meet September thru June on the second Friday of the month. (The website is wrong at the moment)

Rare Disease Advisory Council The Rare Disease Advisory Council was established under New Hampshire Law Section 126-A:79 to promote public awareness of rare diseases within the state. The Council carries out this purpose by providing information, offering guidance, and making recommendations to the New Hampshire Department of He...

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💙 NH Families for Home Nursing — DME Supply Issues
We have a new and urgent message from Vernon Clough, Administrator of NH Medicaid Services: if your family is experiencing any issues with Durable Medical Equipment (DME) supply deliveries, we need to know about them as they happen. Vern has asked us to get this message out to as many families as possible so that problems can be identified and addressed in real time.
If your family is experiencing DME supply problems right now or has experienced them recently, please take three actions immediately:
1️⃣ Contact Vernon Clough, Administrator of NH Medicaid Services, directly and report your issue as soon as it occurs. Vern needs to hear about these problems in real time so the state can act quickly.
📧 [email protected]
📞 (603) 271-9423
2️⃣ Contact Executive Councilor Janet Stevens who has been a tireless advocate for our families and needs to know the full scope of what is happening.
📧 [email protected]
📞 (603) 271-3632
3️⃣ Fill out our confidential survey so we can document and track these issues for our advocacy efforts. All responses are completely anonymous — we cannot see who responded to what.
👉 https://docs.google.com/forms/d/e/1FAIpQLScGpkaix_L2lmydB9ozPK9_DZwcLkdibQHRrFRON3xp1WaxBg/viewform
You can also private message Sarah Husband directly with details about your situation.
Do not wait to report DME issues. The sooner Vern Clough and Councilor Stevens hear from families, the faster we can identify patterns, hold suppliers accountable, and make sure our children have the supplies they need.
👉 Please click SHARE — the more families we reach, the stronger our voice.
💙 NH Families for Home Nursing
Would you like any adjustments before posting?
take out the sentence about contact sarah husband
Here is the updated post:
💙 NH Families for Home Nursing — DME Supply Issues
We have a new and urgent message from Vernon Clough, Administrator of NH Medicaid Services: if your family is experiencing any issues with Durable Medical Equipment (DME) supply deliveries, we need to know about them as they happen. Vern has asked us to get this message out to as many families as possible so that problems can be identified and addressed in real time.
If your family is experiencing DME supply problems right now or has experienced them recently, please take three actions immediately:
1️⃣ Contact Vernon Clough, Administrator of NH Medicaid Services, directly and report your issue as soon as it occurs. Vern needs to hear about these problems in real time so the state can act quickly.
📧 [email protected]
📞 (603) 271-9423
2️⃣ Contact Executive Councilor Janet Stevens who has been a tireless advocate for our families and needs to know the full scope of what is happening.
📧 [email protected]
📞 (603) 271-3632
3️⃣ Fill out our confidential survey so we can document and track these issues for our advocacy efforts. All responses are completely anonymous — we cannot see who responded to what.
👉 https://docs.google.com/forms/d/e/1FAIpQLScGpkaix_L2lmydB9ozPK9_DZwcLkdibQHRrFRON3xp1WaxBg/viewform
Do not wait to report DME issues. The sooner Vern Clough and Councilor Stevens hear from families, the faster we can identify patterns, hold suppliers accountable, and make sure our children have the supplies they need.
👉 Please click SHARE — the more families we reach, the stronger our voice.
💙 NH Families for Home Nursing

Confidential Monthly DME & Medical Supply Access Survey This confidential survey is being used to better understand problems families are experiencing with recurring/monthly Durable Medical Equipment (DME) and medical supply orders in New Hampshire. At this time, responses are being collected for internal data-gathering and advocacy purposes. Please do n...

After having a bit of time to digest all that happened at the Freedom Summit that I attended last week, all I have to say is one word... HOPE!
The Rare Disease Community is being heard and being listened too. I was approached by so many people who wanted to learn more how they could help the Rare Disease Community right here in NH. What an experience!
Here is an article that was written about the event.

A tech-forward future imagined for New Hampshire at 'Freedom Summit' • New Hampshire Bulletin More than two decades after the birth of the Free State Project, another group of philosophically united individuals have their eyes trained on New Hampshire, where they envision a home for a new kind of community.

The website hits on so many Rare Disease topics from Biotech, to AI diagnosis. It's a good read!

https://link.cnbc.com/public/47148008.

link.cnbc.com The science behind rare disease drug development is changing fast, and with it, so is the financial engine that drives it all.

If you are experiencing a shortage of medical supplies please reach out! Info in the comments.

Families with home nursing face medical supply challenges - Concord Monitor Families advocate for standardized practices among NH MCOs as vital medical equipment orders face delays and reductions in quantity.

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!

Freedom Summit 2026 — Bio Innovation & Built Futures | Manchester NH 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.

https://www.businesswire.com/news/home/20260812482557/en/New-Survey-Finds-U.S.-Biotechs-Advancing-Treatments-for-Rare-and-Serious-Diseases-Want-to-Run-Clinical-Trials-in-U.S.-but-Regulatory-Hurdles-are-Sending-Them-Abroad

New Survey Finds U.S. Biotechs Advancing Treatments for Rare and Serious Diseases Want to Run Clinical Trials in U.S. but Regulatory Hurdles are Sending Them Abroad A new survey reveals that U.S. biotechnology companies focused on developing treatments for rare and serious diseases overwhelmingly prefer to conduct first-...

Imagine if we had this in NH!

The power of genetic testing: new screening methods are catching rare diseases before symptoms start 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/ 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!