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Patient Resources


Rare Disease

EURORDIS Voice of Rare Disease Patients in Europe

A non-government patient-driven alliance of 606 rare disease patient organizations in 56 countries

GlobalGenes-Logo Global Genes

One of the leading rare disease patient advocacy organizations in the world

NORD National Organization for Rare Disorders

Federation of health organizations dedicated to helping people with rare diseases

rare2aware-logo Rare2Aware

A Shire community where patients share their experiences and help support others going through similar challenges

ADHD

cpamm-logo The Coalition to Prevent ADHD Medication Misuse

A source of information on the issue of prescription stimulant medication misuse, abuse and diversion

ADHD-OwensFamily Owens Family

Learn from a mom, Shelby Owens, about what it’s like to raise children with ADHD

ADHD-RachelSusko Rachel Susko

Watch Rachel, a college student, talk about living with ADHD after receiving a diagnosis from her physician

ADHD-RichardsFamily Richards Family

Hear from the Richards family as high school student Matthew and his mother talk about ADHD

ADHD-DrPatriciaQuinn Dr Patricia Quinn

Watch Dr. Patricia Quinn, a physician and expert, talk about the challenges facing young adults and adults with ADHD

Alpha-1 Antitrypsin

Alpha-1Foundation Alpha-1 Foundation

Committed to finding a cure and improving the lives of those living with Alpha-1 worldwide

Binge Eating Disorder

BEDA Binge Eating Disorder Association

A national organization focused on providing leadership, recognition, prevention, and treatment of binge eating disorder (BED)

NEDA National Eating Disorders Association

The largest nonprofit organization dedicated to supporting individuals and families affected by eating disorders

Dry Eye Disease

EyeLove-Logo EyeLove

A Shire community providing information for U.S. residents suffering from chronic dry eye

Fabry Disease

NationalFabryDiseaseFoundation National Fabry Disease Foundation (NFDF)

Organization dedicated to support the Fabry disease community and promoting advocacy for its issues

FabryInternationalNetwork Fabry International Network

Our primary aim is to facilitate collaboration between Patient Organisations to support those affected by Fabry Disease

FabrySupportInformationGroup Fabry Support & Information Group (FSIG)

A nonprofit organization whose mission is to raise Fabry awareness by linking patients and family members/caregivers

Gaucher Disease

Gaucher-Association-Logo Gaucher Association

Promoting awareness, pioneering research and providing support and information for those affected by Gaucher disease

NationalGaucherFoundation National Gaucher Foundation

An objective, independent voice of the Gaucher community, providing leadership, outreach and innovative thinking in the US

Hemophilia

European-Haemophilia-Consortium European Haemophilia Consortium

Supports National Member Organisations to improve quality of life of people living with rare bleeding disorders

HemophiliaFederationOfAmerica Hemophilia Federation of America

Advocate of access to safe, affordable therapies and better quality of life for those with bleeding disorders

NationalHemophiliaFoundation National Hemophilia Foundation

Dedicated to finding better treatments and cures for bleeding disorders through education, advocacy, and outreach

WorldFederationOfHemophilia World Federation of Hemophilia

Committed to global leadership in improving and sustaining care for people with inherited bleeding disorders

BleedingDisordersdotCom-Logo Bleeding Disorders

A U.S. community developed by Shire about bleeding disorders, hemophilia, school, relationships and more

Beat-Bleeds-Logo Beat Bleeds App

Download the U.S. BEAT BLEEDS® mobile app to track your bleeds

Hereditary Angioedema

USHAEAssociation US Hereditary Angioedema Association

Founded and staffed by HAE patients and HAE caregivers, HAEA is dedicated to serving persons with angioedema

HAEi International Patient Association for C1 Inhibitor Deficiencies

A global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world

Discover-HAE-Logo Discover HAE

Discover HAE is a patient community provided by Shire for those in the U.S. affected by and living with HAE

Hunter Syndrome

NationalMPSSociety National MPS Society

Support for families and individuals affected by mucopolysaccharidoses (MPS) and related diseases in the US

Hypoparathyroidism

HypoparathyroidismAssociationInc Hypoparathyroidism Association, Inc.

Works to improve the lives of those touched by hypoparathyroidism through awareness and support

HypoparaAnswers Hypopara Answers

A resource for patients and families in the U.S. managing hypoparathyroidism

Oncology

WorldPancreaticCancerCoalition World Pancreatic Cancer Coalition

Driven to propel transformational change and raise global awareness for those affected by pancreatic cancer

Primary Immunodeficiency

ImmuneDeficiencyFoundation Immune Deficiency Foundation

National patient organization dedicated to improving the diagnosis, treatment & quality of life of persons with PI

IPOPI International Patient Organisation for PIDs

Focused on improving awareness, access to early diagnosis and care for people with PID worldwide

JeffreyModellFoundation Jeffrey Modell Foundation

Global Organization dedicated to early diagnosis and the search for treatments and cures for Primary Immunodeficiencies

MyIGSource MyIGSource

A Shire community of support and education for those in the U.S. affected by a PI diagnosis

Short Bowel Syndrome

TheOleyFoundation The Oley Foundation

Oley provides resources to consumers dependent on home parenteral (IV) and enteral (tube-fed) nutrition

ShortBowelSyndromeFoundation Short Bowel Syndrome Foundation, Inc. (SBSF)

The Short Bowel Syndrome Foundation strives to educate, support, and empower patients who live with SBS

IFFGD-Logo IFFGD

The IFFGD is a nonprofit organization dedicated to helping those affected by chronic digestive conditions

Aspen ASPEN (American Society for Parental and Enteral Nutrition)

The ASPEN patient information center was designed to provide patients and caregivers with information about nutrition support, including parenteral and enteral nutrition

PINNT PINNT

PINNT is a UK-based organization that supports patients on intravenous and naso-gastric nutrition treatment

UOAA United Ostomy Associations of America

The UOAA supports, empowers, and advocates for people affected by ostomy or continent diversion surgery

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