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Rare Disease Health Info & Community

Learn about numerous rare diseases including symptoms, diagnosis, treatment, patient stories & more from a rare disease community perspective.
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Topics: iih, myasthenia gravis, pouchitis disease activity index, rare disease health info, raredisease.net, raremark, sanfilippo syndrome

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jonahsjustbegun.org

jonahsjustbegun.org jonahsjustbegun.org           
Jonah's Just Begun - Curing SanFilippo Disease One Day at a Time
Jonah's Just Begun - Curing SanFilippo Disease One Day at a Time


Categories: Sports, Health and Wellness
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sanfilippo.org.au

sanfilippo.org.au sanfilippo.org.au           
Sanfilippo Children's Foundation
Sanfilippo is a rare genetic condition that causes fatal brain damage. It is a type of childhood dementia and most patients never reach adulthood. But there is hope. Researchers around the world are working hard to find effective treatments.

Semrush Rank: 506,146
Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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teamsanfilippo.org

teamsanfilippo.org teamsanfilippo.org           
Team Sanfillipo — Parents united to find a cure or treatments
Cure Sanfilippo, Gene therapy, Get help for Sanfilippo, MPS, MPS III, Rare diseases, lysosomal disease, and Fundraising


Categories: Business, Charitable Organizations
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phoenixnestbiotech.com

phoenixnestbiotech.com phoenixnestbiotech.com           
Phoenix Nest Inc.
Phoenix Nest Inc.

Semrush Rank: 927,555
Categories: Business, Business
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mpssociety.org

mpssociety.org mpssociety.org           
National MPS Society - We Help Cure, Support, & Advocate for MPS & ML
We support life-saving research for mucopolysaccharidosis (MPS) & mucolipidosis (ML), and we provide community resources, support, & more.

Moz DA: 52 Moz Rank: 4.6 Semrush Rank: 344,755 Facebook ♡: 1,906
Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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ihrfoundation.org

ihrfoundation.org ihrfoundation.org           
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Categories: Health, Health and Wellness
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stopald.org

stopald.org stopald.org           
The Stop ALD Foundation
The Stop ALD Foundation focuses on accelerating the process of developing
new knowledge and new therapies for adrenoleukodystrophy (ALD), and works
to accelerate implementation of newborn screening for ALD. We also educate
the medical profession and the public about ALD, raising awareness in order
to improve detection, diagnosis and treatment. In addition, we serve as a
resource to families affected by the condition.

Semrush Rank: 94,573
Categories: Marketing/Merchandising, Health and Wellness
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curesff.org

curesff.org curesff.org           
Cure Sanfilippo Foundation | Accelerating a cure for Sanfilippo Syndrome
Every parents dreams of their child's future. Sanfilippo Syndrome takes that away and replaces it with pain and suffering before death. Cure Sanfilippo Foundation advocates for and funds research to accelerate discovery of a cure or treatment options for children with Sanfilippo Syndrome (MPS III).

Semrush Rank: 39,406,583
Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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iih.org.uk

iih.org.uk iih.org.uk           
Welcome to IIH UK
The IIH UK website is a source of information for IIH – Idiopathic Intracranial Hypertension


Categories: Web Mail, Health and Wellness
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aldlife.org

aldlife.org aldlife.org           
Home - Alex - The Leukodystrophy Charity
Home - Alex - The Leukodystrophy Charity


Categories: Business, Health and Wellness
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myelin.org

myelin.org myelin.org           
Home - Myelin Magazine
Discover the science of the human brain

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Categories: Health, Health and Wellness
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myastheniagravis.org

myastheniagravis.org myastheniagravis.org           
Conquer Myasthenia Gravis - Offering Help to Myasthenia Gravis Patients
MG is a neurological disorder. Conquer Myasthenia Gravis is driven by the desire to help MG patients get prompt diagnosis and optimal care.

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myastheniagravisnews.com

myastheniagravisnews.com myastheniagravisnews.com           
Myasthenia Gravis News Home
The Web's Daily Resource for Myasthenia Gravis News

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Categories: Health, Health and Wellness
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myasthenia.org

myasthenia.org myasthenia.org           
Myasthenia Gravis Foundation of America (MGFA)
The Myasthenia Gravis Foundation of America (MGFA) works to raise awareness for and support those living with myasthenia gravis (MG).

Facebook ♡: 703
Categories: Health, Health and Wellness
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myaware.org

myaware.org myaware.org           
myaware
Myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia.

Semrush Rank: 292,693
Categories: Business, Health and Wellness
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hemophilianewstoday.com

hemophilianewstoday.com hemophilianewstoday.com           
Hemophilia News Today Home - Hemophilia News Today
The Web's Daily Resource for Hemophilia News

Semrush Rank: 63,570
Categories: Health, Health and Wellness
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xperiome.com

xperiome.com xperiome.com           
Get to know rare disease patients
Match research-ready members to clinical and real-world studies, faster and smarter than ever before through our data-driven knowledge bank of the rare experience.

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Categories: Business, Business
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adrenoleukodystrophy.info

adrenoleukodystrophy.info adrenoleukodystrophy.info           
Adrenoleukodystrophy - Adrenoleukodystrophy.info
Information platform for adrenoleukodystrophy: treatment options, clinical presentations, underlying biochemistry & genetics and the ALD Mutation Database.


Categories: Health, Business
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ulf.org

ulf.org ulf.org           
HOME - United Leukodystrophy Foundation
Discover how United Leukodystrophy Foundation in DeKalb, IL supports medical research, provides referrals, and more. . Ulfborg-Vemb was a municipality (Danish, kommune) in the former Ringkjøbing County on the west coast of the Jutland peninsula in west Denmark. By January 1, 2007, Ulfborg-Vemb municipality ceased to exist due to Kommunalreformen ("The Municipality Reform" of 2007). It was merged with existing Holstebro and Vinderup municipalities to form the new Holstebro municipality. This created a municipality with an area of 790 km2 and a total population of 56,204. Ulfborg-Vemb covered an area of 226 km2, and had a total population of 6,959 (2005).


Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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everylifefoundation.org

everylifefoundation.org everylifefoundation.org           
EveryLife Foundation for Rare Diseases
We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

Moz DA: 46 Moz Rank: 4.6 Semrush Rank: 475,904
Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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hemophiliafed.org

hemophiliafed.org hemophiliafed.org           
Home - Hemophilia Federation of America
Shaping a better future Assisting From emergency assistance to scholarships, HFA is here to help you through all stages of life. Educating As we continue to learn, we offer many tools to help you talk to family members, physicians, and teachers. Advocating We are very vocal about your rights and access to care. Join us […]


Categories: Health, Health and Wellness
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sanfilipponews.com

sanfilipponews.com sanfilipponews.com           
Sanfilippo News Home | Sanfilippo Syndrome News
The Web's Daily Resource for Sanfilippo Syndrome News

Semrush Rank: 1,592,882
Categories: Health, Health and Wellness
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cysticfibrosis.ca

cysticfibrosis.ca cysticfibrosis.ca           
Cystic Fibrosis Canada
Cystic Fibrosis Canada is a national charitable not-for-profit corporation committed to finding a cure for cystic fibrosis (CF). We invest more in life-saving CF research and care than any other non-governmental agency in Canada. . Cystic Fibrosis Canada is a national charitable not-for-profit corporation established in 1960.Cystic Fibrosis Canada's mandate is to help individuals with cystic fibrosis, principally by funding cystic fibrosis research and care. The organization also provides educational materials for the cystic fibrosis community and the general public; undertakes advocacy initiatives with, and on behalf of Canadians with cystic fibrosis, and raises funds to supports its programs.

Moz DA: 52 Moz Rank: 4.3 Semrush Rank: 764,733 Facebook ♡: 1,217
Categories: Health, Health and Wellness
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abbygracefoundation.org

abbygracefoundation.org abbygracefoundation.org           
Abby Grace Foundation - Helping Find a Cure for Sanfilippo Syndrome
Helping Find a Cure for Sanfilippo Syndrome

Semrush Rank: 4,880,457
Categories: Health, Health and Wellness
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sicklecellanemianews.com

sicklecellanemianews.com sicklecellanemianews.com           
Sickle Cell Disease News Home | Sickle Cell Disease News
The Web's Daily Resource for Sickle Cell Disease News

Semrush Rank: 84,594
Categories: Internet Services, Health and Wellness
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adrenoleukodystrophynews.com

adrenoleukodystrophynews.com adrenoleukodystrophynews.com           
Adrenoleukodystrophy News Home
No Description.

Semrush Rank: 469,377
Categories: Health, Health and Wellness
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haemophilia.org.nz

haemophilia.org.nz haemophilia.org.nz           
Haemophilia Foundation | Bleeding Disorders | Haemophilia Foundation of New Zealand Inc.
HFNZ supports and represents people and families suffering from haemophilia and other related bleeding disorders. Find out more about our foundation here!


Categories: Health, Health and Wellness
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clarahealth.com

clarahealth.com clarahealth.com           
Clara: Access new treatments with personalized support
Clinical studies represent the latest research about your condition, and can offer access to new therapy options years before they’re available commercially.

Semrush Rank: 508,771
Categories: Health, Information Technology
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mpssociety.org.uk

mpssociety.org.uk mpssociety.org.uk           
MPS Society | Support for MPS, Fabry and related diseases in the United Kingdom
The Society for Mucopolysaccharide Diseases (MPS Society) provides professional support to individuals and families affected by MPS, Fabry and related lysosomal storage diseases. Contact our helpline Monday-Friday 9-5pm on 0345 389 9901 or email us at [email protected]


Categories: Business, Health and Wellness
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ihaveiih.org

ihaveiih.org ihaveiih.org           
Directory of Wholesale Companies and Dropship Suppliers | SaleHoo
Wholesale Supplier Directory: Search 8000+ verified wholesale and dropship companies for low-cost product sourcing. Especially designed for eBay and Amazon sellers!
SaleHoo is the most trusted dropshipping portal on the web since 2005. Helping thousands of people start and grow their online stores through our actionable guides, tutorials, active community forum, market research tools, and massive list of verified low-cost suppliers.


Categories: Information Technology
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livingwithhemophilia.ca

livingwithhemophilia.ca livingwithhemophilia.ca           
Aim Higher. Life is what you make of it
Hear how people with hemophilia are realizing their potential, regardless of their condition

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Categories: Marketing/Merchandising, Health and Wellness
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northcrossing.com

northcrossing.com northcrossing.com           
The NorthCrossing
A meeting point of many different roads, all for one purpose: To help.

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Categories: Blogs/Wiki, Health and Wellness
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rochestercolon.com

rochestercolon.com rochestercolon.com           
Rochester Colon & Rectal Surgeons in Rochester, NY
Rochester Colon-Rectal Surgeons is a group of colorectal specialists specializing in the treatment of tumors of the colon, diverticulitis and Crohn's disease

Moz DA: 30 Moz Rank: 3.3 Semrush Rank: 269,925
Categories: Marketing/Merchandising, Health and Wellness
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bluebirdbio.com

bluebirdbio.com bluebirdbio.com           
bluebird bio | Pioneering Gene Therapies | Recode for Life
bluebird bio | Pioneering Gene Therapies | Recode for Life

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Categories: Business, Health and Wellness
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myasthenia-ca.org

myasthenia-ca.org myasthenia-ca.org           
Myasthenia Gravis Foundation of California |
Myasthenia Gravis Foundation of California |

Semrush Rank: 5,523,016
Categories: Health, Health and Wellness
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matthewandandrew.org

matthewandandrew.org matthewandandrew.org           
Matthew & Andrew - HLH | Hemophagocytic Lymphohistiocytosis | 700 Miles to Hope
Matthew & Andrew - HLH | Hemophagocytic Lymphohistiocytosis | 700 Miles to Hope

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Categories: Marketing/Merchandising, Health and Wellness
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cystic-fibrosis.com

cystic-fibrosis.com cystic-fibrosis.com           
Cystic Fibrosis Health Info & Community
Learn about Cystic Fibrosis including symptoms, diagnosis, treatment, patient stories, & more from a Cystic Fibrosis community perspective.

Semrush Rank: 128,924 Facebook ♡: 366
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cysticfibrosisnewstoday.com

cysticfibrosisnewstoday.com cysticfibrosisnewstoday.com           
Cystic Fibrosis News Today Home | Cystic Fibrosis News Today
Your Online Resource for the Latest CF News

Semrush Rank: 76,192
Categories: General News, Health and Wellness
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cysticfibrosis.org.uk

cysticfibrosis.org.uk cysticfibrosis.org.uk           
Cystic Fibrosis Trust Homepage | CF Trust
Cystic Fibrosis Trust Homepage | CF Trust

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Categories: Marketing/Merchandising, Health and Wellness
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mgakc.org

mgakc.org mgakc.org           

Semrush Rank: 2,680,549
Categories: Business, Health and Wellness
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pediatricbrainfoundation.org

pediatricbrainfoundation.org pediatricbrainfoundation.org           
The Pediatric Brain Foundation - pediatricbrainfoundation.org
The Pediatric Brain Foundation - pediatricbrainfoundation.org

Semrush Rank: 1,812,337
Categories: Health, Health and Wellness
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allabouthae.com

allabouthae.com allabouthae.com           
AllAboutHAE―Your source for all things hereditary angioedema
Learn all about identifying and treating hereditary angioedema (HAE), a rare disease that causes swelling anywhere in the body. Attacks can be painful and, in some cases, lifethreatening. Symptoms often include hand or foot swelling, stomach pain, or swelling in the throat.


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globalgenes.org

globalgenes.org globalgenes.org           
Homepage - Global Genes
Homepage - Global Genes

Semrush Rank: 228,321 Facebook ♡: 3,785
Categories: Health/Conditions and Diseases, Health/Child Health, Business/Biotechnology and Pharmaceuticals, Business, General Organizations
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hlhsupport.org

hlhsupport.org hlhsupport.org           
What is HLH?
What is HLH?

Semrush Rank: 1,626,463
Categories: Health, Health and Wellness
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hemophilia.ca

hemophilia.ca hemophilia.ca           
Canadian Hemophilia Society - Help Stop the Bleeding
STATEMENT - CHS reacts to Health Canada decision on relaxing donor selection criteria
CLICK HERE to read the full statement.
 

  LEARN MORE
CHS 2022 AGM
May 8, 2022 at 1:00 p.m. (EDT).
The meeting will be held in hybrid mode. Album by Hemophiliac. Hemophiliac is a limited edition album of improvised experimental music by John Zorn, Ikue Mori and Mike Patton. The album was released as a limited edition 2-CD set of 2,500 copies, personally autographed by Zorn, Patton and Mori, on Zorn's Tzadik label.

Facebook ♡: 49
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biomarin.com

biomarin.com biomarin.com           
BioMarin Pharmaceutical Inc.
BioMarin is a world leader in developing and commercializing innovative biopharmaceuticals for rare diseases driven by genetic causes.

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Categories: Health, Business
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huntershope.org

huntershope.org huntershope.org           
Leukodystrophy & Krabbe Newborn Screening Awareness | Hunter's Hope
Hunter's Hope Foundation is a non-profit organization committed to family and medical care for those affected by Leukodystrophy and Newborn Screening. Visit our site for more information.

Moz DA: 48 Moz Rank: 3.8 Semrush Rank: 314,177 Facebook ♡: 483
Categories: Education/Reference, Health and Wellness
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leukodystrophyresourceresearch.org

leukodystrophyresourceresearch.org leukodystrophyresourceresearch.org           

Semrush Rank: 5,108,220
Categories: Health, Health and Wellness
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haemophilia.org.au

haemophilia.org.au haemophilia.org.au           

Haemophilia Foundation Australia

Haemophilia Foundation Australia homepage. Information on inherited bleeding disorders, eg haemophilia, hemophilia, von Willebrand disorder, Disease

Semrush Rank: 1,402,020
Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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mg-mi.org

mg-mi.org mg-mi.org           
Myasthenia Gravis Foundation of Michigan
Myasthenia Gravis Foundation of Michigan is committed to finding a cure for Myasthenia Gravis and closely related disorders, improving treatment options and providing information and support to people with Myasthenia Gravis through research, education, community programs, and advocacy.

Semrush Rank: 1,427,704
Categories: Non-Profit/Advocacy/NGO, Health and Wellness
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ihaveiih.com

ihaveiih.com ihaveiih.com           
Blog | Power up brain energy
Blog | Power up brain energy


Categories: Marketing/Merchandising, Health and Wellness
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j-pouch.org

j-pouch.org j-pouch.org           
Topics | The J-Pouch Group
Topics | The J-Pouch Group


Categories: Health, Health and Wellness
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mghope.org

mghope.org mghope.org           
Myasthenia Gravis - Myasthenia Gravis Hope Foundation
Offering emergency resources, advocacy, support and education for Myasthenia Gravis. It is our focus to walk with patients and families every step of the way.


Categories: Blogs/Wiki, Information Technology
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mps1disease.com

mps1disease.com mps1disease.com           
Gateway Page
Gateway Page

Semrush Rank: 893,800
Categories: Health, Health and Wellness
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alexionpharma.com

alexionpharma.com alexionpharma.com           
Alexion
Alexion is a global biopharmaceutical company focused on developing life-changing therapies for people living with rare disorders.

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Categories: Business, Health and Wellness
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fabrydisease.org

fabrydisease.org fabrydisease.org           
Sucuri WebSite Firewall - Access Denied
Sucuri WebSite Firewall - Access Denied

Semrush Rank: 1,279,500 Facebook ♡: 1,014
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fightald.org

fightald.org fightald.org           
index
Fighting Illness Through Education


Categories: Education/Reference, Society and Lifestyles
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