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Mashup Score: 2Home | CanMPS Registry - 6 day(s) ago
Welcome to The Canadian MPS Registry website! This website has information about the patient registry and how to join.
Source: www.mpsregistry.caCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 14Home | CanPKU Registry - 6 day(s) ago
Welcome to The Canadian PKU Registry website! This website has in formation on the patient registry and how to join. At this time, to be eligible to participate, patients must have a diagnosis of phenylketonuria (PKU), be receiving health care in Canada, and be 18 years old or younger (signing up has to be done by a caregiver).
Source: www.pkuregistry.caCategories: General Medicine News, Rare DiseaseTweet-
Introducing the first patient registry for #phenylketonuria (PKU) based in Canada for Canadian PKU patients and caregivers, housed on NORD's IAMRARE platform. Advance #PKU research by sharing your experiences today: https://t.co/hvJavTQGYP Questions? Email pkuregistry@cheo.on.ca https://t.co/t0Mm1e2tfu
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Mashup Score: 6
QUINCY, MA, May 1, 2024—The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO effective immediately. She
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Today, #NORD announces the retirement of our CEO, Peter L. Saltonstall, who served for 16 years following our founder, Abbey Meyers. We're excited to share Pamela Gavin, longtime #RareDisease advocate and NORD visionary, has been named new CEO! Read more: https://t.co/RmNw8VctBi https://t.co/Jg8eILdk19
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Mashup Score: 13Living Rare Living Stronger - Rare Disease Patient Event - 8 day(s) ago
The Living Rare, Living Stronger NORD Patient and Family Forum will be a truly patient first event. Through it all, we will maintain our objectives: networking, education, inspiration, hope and fun!
Source: livingrare.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD takes California! Join us on the West Coast for our 2024 Living Rare, Living Stronger Patient & Family Forum and #RareImpactAwards. Learn how you can participate in these convenings and celebrate the #RareDisease community on June 7-8 by visiting https://t.co/9gS7bfYNI5. https://t.co/pWJn7qoiTe
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Mashup Score: 6Rare Impact Awards - NORD's Rare Impact Awards - 8 day(s) ago
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease community.
Source: rareimpact.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 10The Surreal Reality of Being Undiagnosed: Lori’s Story in Honor of Undiagnosed Day - National Organization for Rare Disorders - 9 day(s) ago
By Lori W.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 21April Showers Bring May Flowers: Christine’s National Volunteer Month Story - National Organization for Rare Disorders - 9 day(s) ago
By Christine M.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Today is #UndiagnosedDay and we're sharing stories from our #RareDisease community members on their #undiagnosed experiences. Christine is NORD's Pennsylvania @RareAction Network Volunteer Ambassador and an undiagnosed patient and parent. Read her story: https://t.co/SUc7pQCCWa https://t.co/UAbH9aziRy
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Mashup Score: 18Agenda - Living Rare Living Stronger - 10 day(s) ago
Check out the Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards agenda.
Source: livingrare.orgCategories: General Medicine News, Rare DiseaseTweet-
Curious what's in store for the 2024 NORD #LivingRareForum? Join us in Los Angeles, California or virtually this June to attend these sessions on important #RareDisease topics and meet zebras from around the country! Read the full agenda & register here: https://t.co/5Oo1rU1cks https://t.co/g4hVdtc4y7
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Mashup Score: 2Genetic Counselor to Camp Counselor: Kate’s Story in Honor of National Volunteer Month - National Organization for Rare Disorders - 11 day(s) ago
By Kate R., MS, CGC
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 8
SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
#California is one step closer to establishing a #RareDisease Advisory Council! Earlier this week, the bill to establish an #RDAC, introduced by @AsmRickZbur, passed out of committee, a major milestone. Learn more and take action to move the bill forward: https://t.co/N8CXSUmZCA https://t.co/LLxfwKRd7Y
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Are you a patient or caregiver of someone with #mucopolysaccharidosis (MPS) based in Canada? Advance research by participating in the first Canadian patient registry for #MPS, housed on NORD's IAMRARE platform: https://t.co/rbIaV2S6Qn Questions? Email mpsregistry@cheo.on.ca https://t.co/dhlJlM6xCa