Gouldsyndromefoundation.org

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Gould syndrome foundation

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Gould Syndrome Foundation (@GouldSyndrome) / Twitter

#GouldSyndromeFoundation is a parent lead, #patientadvocacy #nonprofit. Global Health Registry of #COL4A1 #COL4A2 #ECM #stroke #epilepsy #genetics #raredisease

Twitter.com

DA: 11 PA: 15 MOZ Rank: 26

Gould Syndrome Foundation (COL4a1/COL4A2) - NORD …

Gould Syndrome Foundation (COL4a1/COL4A2) Address 2648 Berkshire Rd Cleveland Heights, OH 44106 USA Email Address [email protected] Website https://www.gouldsyndrome.org/ Description Gould Syndrome Foundation (COL4a1/COL4A2) seeks to educate the community on the rare disease COL4A1 and it's subcategorical diagnosis'.

Rarediseases.org

DA: 16 PA: 41 MOZ Rank: 58

Gould Syndrome Foundation Col4a1/Col4a2 - Home

Gould Syndrome Foundation Col4a1/Col4a2 November 2, 2021 · We are excited to announce the first ever peer reviewed publication to come from a Gould Syndrome patient …

Facebook.com

DA: 16 PA: 18 MOZ Rank: 36

Home | Gould Family Foundation

LEVERAGE = 3.40 X Our funding contribution is multiplied over 3 times with matching funds from the Segal Family Foundation, donations of new medical equipment and funding for our biomedical program from the DAK Foundation and funding from the CRI Foundation supporting Community Health Worker Programs in underserved communities in Burundi and the …

Gouldfamilyfoundation.com

DA: 29 PA: 29 MOZ Rank: 33

Gould Syndrome Foundation Col4a1/Col4a2 Group

Family Support and Advocacy site for The Gould Syndrome Foundation.

It-it.facebook.com

DA: 18 PA: 24 MOZ Rank: 46

COL4A1/A2-Related Disorders - NORD (National Organization for …

Summary. COL4A1/A2-related disorders are rare, genetic, multi-system disorders. They are typically characterized by abnormal blood vessels in the brain (cerebral vasculature defects), eye development defects (ocular dysgenesis), muscle disease (myopathy), and kidney abnormalities (renal pathology); however, many other aspects of the syndrome ...

Rarediseases.org

DA: 16 PA: 43 MOZ Rank: 64

Epilepsy and Related Challenges in Children with COL4A1 and …

Specifically, all families with Gould Syndrome must have access to infantile spasms awareness and stroke education materials. The Gould Syndrome Foundation is planning several improvements to this patient registry which will encourage collaboration and innovation for the benefit of people living with Gould syndrome. Learn More

Cureepilepsy.org

DA: 20 PA: 50 MOZ Rank: 44

Members & Partners | REN

Gould Syndrome Foundation. Grin2b Foundation. Hope for HIE. Hope for Hypothalamic Hamartomas. Hope for ULD. International Foundation for CDKL5 Research. International SCN8A Alliance. Jordan's Guardian Angels (Jordan's Syndrome - PPP2R5D, PPP2R1A, PPP2R5C) KCNA2 Epilepsy Global Alliance. KCNC1 Foundation (COMING SOON) KCNQ2 Cure …

Rareepilepsynetwork.org

DA: 27 PA: 17 MOZ Rank: 51

Hunter syndrome - Symptoms and causes - Mayo Clinic

Hunter syndrome is a very rare, inherited genetic disorder caused by a missing or malfunctioning enzyme. In Hunter syndrome, the body doesn't have enough of the enzyme iduronate 2-sulfatase. This enzyme's job is to break down certain complex molecules, and without enough of this enzyme, the molecules build up in harmful amounts. The buildup of ...

Mayoclinic.org

DA: 18 PA: 50 MOZ Rank: 91

Gould Syndrome Foundation - GuideStar Profile

Gould Syndrome Foundation seeks to educate the community on the rare disease COL4A1/COL4A2 and its sub categorical diagnoses. We provide education, advocacy and resources for families and individuals affected. We bring insight to the Scientific and Medical community. Notes from the nonprofit

Guidestar.org

DA: 17 PA: 19 MOZ Rank: 45

Login Welcome | The Glenn Gould Foundation

Recent Posts. Celebrate the 90th Anniversary of Glenn Gould’s Birth! Unveiling the 13th Glenn Gould Prize Portrait; Remembering John Lawson (1926-2021)

Glenngould.ca

DA: 17 PA: 15 MOZ Rank: 42

Gould Syndrome Foundation - Overview, News & Competitors

Gould Syndrome Foundation. Get Full Access. Who is Gould Syndrome Foundation. We operate as a small group of committed volunteers, advocates, and researchers. We are funded fully by the generous support of loving family, friends and allies of those with this rare disease. Board of Directors Read More. Headquarters: Website: www.gouldsyndromefoundation.org. Is this …

Zoominfo.com

DA: 16 PA: 38 MOZ Rank: 65

#gouldsyndromefoundation hashtag on Twitter

See Tweets about #gouldsyndromefoundation on Twitter. See what people are saying and join the conversation.

Twitter.com

DA: 11 PA: 32 MOZ Rank: 55

Identification of Fibronectin 1 as a candidate genetic modifier in a ...

(https://www.gouldsyndromefoundation.org). 70 . 71 Gould syndrome is highly clinically heterogeneous and can have variable penetrance and severity 72 across many organs. Cerebrovascular, ocular, renal and neuromuscular pathologies are among the 73 most commonly described manifestations. We originally described a mouse model of Gould syndrome 74 with …

Biorxiv.org

DA: 15 PA: 45 MOZ Rank: 73

Coming Soon | The Glenn Gould Foundation

The Glenn Gould Foundation works to honour Glenn Gould’s spirit and legacy by celebrating innovation and excellence, promoting creativity and transforming lives …

Glenngould.ca

DA: 17 PA: 13 MOZ Rank: 44

Epilepsy and related challenges in children with COL4A1 and ... - X …

The Gould Syndrome Foundation developed questions for the GSGR with iterative input from patients and caregivers. An institutional review board issued an exemption determination before data collection began. Participants were recruited through social media and clinician referrals. All participants consented electronically, and the data were collected and managed using …

X-mol.com

DA: 13 PA: 26 MOZ Rank: 54

Finding the best care for Zeeva - Boston Children's Answers

Not only did Dr. Madsen, help heal Zeeva’s brain, but he was instrumental in supporting us as we founded the Gould Syndrome Foundation, a 501(c)(3) non-profit that promotes education, advocacy, and medical advancements in Gould Syndrome, COL4A1/COL4A2 diseases. I don’t think we will ever be able to truly articulate our …

Answers.childrenshospital.org

DA: 29 PA: 18 MOZ Rank: 63

Seizure Tracker - Epilepsy: It’s not just Seizures™

Gould Syndrome Foundation LGS Foundation My Epilepsy Story STXBP1 Foundation TESS Research Foundation Please contact us at [email protected] if you have questions about the INJS initiative or would like to join the collaboration.

Seizuretracker.com

DA: 22 PA: 44 MOZ Rank: 83

Gould Family Foundation Inc - GuideStar Profile

IRS filing requirement. This organization is required to file an IRS Form 990-PF. Sign in or create an account to view Form(s) 990 for 2019, 2018 and 2017.

Guidestar.org

DA: 17 PA: 19 MOZ Rank: 54

Identification of fibronectin 1 as a candidate genetic modifier in a ...

Importantly, a non-profit foundation has been established and is currently enrolling patients in a global registry under the name Gould syndrome (https://www.gouldsyndromefoundation.org), which we have now adopted in response. Gould syndrome is highly clinically heterogeneous and can have variable penetrance and severity …

Ncbi.nlm.nih.gov

DA: 20 PA: 25 MOZ Rank: 64

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