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Shwachman-Diamond Syndrome Foundation
What is SDS? Shwachman Diamond Syndrome (SDS) is a rare blood disorder that affects the pancreas, bone marrow, and skeleton, but other organs may also be affected.
Impactful Medicines for Rare Neurological Disorders | Ovid Therapeutics
This is Ovid—where we are boldly transforming the lives of people affected by rare neurological diseases including Angelman syndrome, Fragile X syndrome and rare epilepsies.
Home - Zynerba
Advancing Science. Improving Connections. Next-generation transdermal cannabinoid therapeutics to improve the lives of patients affected by rare and near-rare neuropsychiatric conditions.
Rare Revolution Magazine
A digital magazine giving a voice to patients affected by RARE conditions and the charities that represent and support them.
Grey Matters - Honest conversations about growing older in Australia
The issues that affect senior Australians are rarely tackled in the public sphere from an insider’s perspective. We’re out to change that.
Author: Mark Bates - UnitingCare financial counsellor
Cancer52 | The common voice for rare and less common cancers
Cancer52 is an alliance of over 90 organisations, united in improving the future for everyone affected by rare and less common cancers.
The French Muscular Dystrophy Association (AFM-Téléthon)
AFM-Téléthon is an association composed of patients and their families who are affected by a genetic, rare, progressive and severely disabling disease
VACTERL | Anja Christoffersen
VACTERL Association: a rare condition that affects 1 in 10,000-40,000 people. VACTERL describes a collection of congenital malformations.
Neuromyelitis Optica Spectrum Disorder | Sumaira Foundation
Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare syndrome that affects the central nervous system as well as the spinal cord.
Mesothelioma Lawyers - Injury Lawyers -Experienced Asbestos Attorneys
Mesothelioma Lawyers: Mesothelioma is a rare form of cancer caused by asbestos exposure that affects the tissue lining of a person’s organs.
Steve Waugh Foundation | Rare Disease Foundation Australia
Steve Waugh Foundation's mission is to enhance the lives of children and families affected by a rare disease. Grants and fundraising assistance available.
Neurogene | Developing life-changing Genetic Medicines
Neurogene is focused on developing life-changing genetic medicines for patients & families affected by rare, devastating neurological diseases.
Leber Congenital Amaurosis Non-Profit | Hope in Focus
Hope in Focus is a non-profit organization dedicated to providing information and support to those affected by LCA and other rare inherited retinal diseases.
Author: Sofia Sees Hope
Kidz1stFund | Kidz1stFund Fights FANCONI ANEMIA
Kidz1stFund was created by Jimbo and Candi Fisher to fund the fight against Fanconi anemia—a rare blood disorder that affects their son Ethan and
Living with Fragile X
Living with Fragile X takes a rare and intimate look at lives of several families who have a member affected by fragile x syndrome. Available to watch at www.livingwithfragilex.com
Accueil Filière maladies rares - Filière Muco CFTR - mucoviscidose
Le domaine d’expertise de la filière maladies rares Muco-CFTR couvre la mucoviscidose et l’ensemble des affections liées à une anomalie de la protéine CFTR
Author: Super Utilisateur
FNMS Home Page | The Foundation for Nager and Miller Syndromes
The Foundation for Nager and Miller Syndromes (FNMS) is an international support group dedicated to helping those affected by these two similar and extremely rare, genetic conditions which involve moderate to severe **** and limb anomalies, but do not usually affect intellect.
Project Sebastian A Rare Disease Foundation Funding Support
We at Project Sebastian gives support, funding and hope to families affected by a child with a rare disease. Provide education, therapies, and counseling.
No family to face CDH alone | CDH Australia
We support Australian families affected by the rare birth condition Congenital Diaphragmatic Hernia (CDH). Let's conquer CDH together.
Other sites like blackswanfoundation ch
Periodic Fevers – autoinflammatory conditions
Support, resources for anyone affected by rare autoinflammatory disease; science, articles, patient stories, expert opinion, centre of excellence locator
Rare diseases Luxembourg , we care 4 rare! - ALAN
We aim to improve the quality of life of individuals and families affected by rare diseases in Luxembourg. Discover how we can help you.
Genetic Support | Rare Diseases | Genetic Alliance Australia | Support for those affected directly or indirectly by genetic conditions s
Support for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia. Information, support network, personal stories, news and events.
Home Page | Your Heart's Message | Official Site
Find info on transthyretin amyloid cardiomyopathy (ATTR-CM), a rare but life-threatening condition that affects the heart. Get the message, your heart mATTRs.
| Malaysian Rare Disorders Society
Malaysian Rare Disorders Society (MRDS) We represent and look out for the welfare of individuals including their families that are affected by rare disorders. Learn More About MRDS Who We Are Malaysian Rare Disorders Society (MRDS) was formed in 2004, with the help and guidance of the Genetic Unit, Department of Paediatrics, University Malaya Medical […]
Homepage Ipsen - Fondation Ipsen
Rare Diseases Rare but not alone Mission Accelerate rare disease diagnosis There are 7,000 rare diseases affecting 300 million people worldwide. 75% of patients are children. 1 in 2 patients do not have an accurate diagnosis. A quarter of patients wait 4 years to get a diagnosis. Our program brings together world experts to improve … Homepage Ipsen Read More »
Catabasis
Our mission is to bring hope and life-changing therapies to patients and their families affected by rare diseases, and our primary focus is Duchenne muscular dystrophy.
Prader-Willi Syndrome Association NZ
Prader-Willi Syndrome (PWS) is a rare and complex neurodevelopmental, genetic disorder occurring in 1 in 16,000 births, affecting approx 200 New Zealanders.
Accueil - Génération 22
Délétion 22q11 Syndrome de Di George syndrome velo-cardio-**** chromosome 22 anomalie chromosome 22 Maladies rares Maladies génétiques affection génétique
Welcome to OnePath.com
Takeda's OnePath® is committed to providing personalized product support services to patients and their caregivers affected by rare diseases. Learn more about how we can help.
RareConnect
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
Rare Renal | The UK Kidney Association
It is often hard to find detailed information on rare diseases because they affect so few patients. Doctors may only treat a few patients with a rare disease in their whole career. This site aims to provide information and links to 27 different rare renal conditions and their current activity such as patient support groups and research. Please contact us if you are interested
- Rare Dementia Support
Between 5% and 15% of people living with a dementia have a rare dementia. This can bring with it a unique and complex set of challenges, including difficulties with language, vision, movement and behaviour. However, there is a widespread lack of understanding and a shortage in the resources needed to support those affected. Rare Dementia […]
Ensemble contre FPI – Accompagner les patients atteints de Fibrose Pulmonaire Idiopathique
La fibrose pulmonaire idiopathique, ou FPI, est une maladie grave et relativement rare, qui s’attaque aux poumons et affecte la respiration au quotidien. Si vous, ou quelqu’un qui vous est cher, êtes affecté(e) per la FPI, informez-vous dès aujourd’hui sur la FPI.
Comradis
AMICULUM Comradis is a specialist healthcare communications and commercialization consultancy. Our priority is to ensure that patients and families affected by rare diseases and uncommon cancers receive the best possible care and support
Gould Syndrome - COL4A1 - COL4A2 genes - Gould Syndrome Foundation
Gould Syndrome Foundation a 501(c)3 Nonprofit, exists to provide hope and help to children and adults with the Ultra Rare Disease, Gould Syndrome; affecting COL4A1 and COL4A2 genes.
Author: Jselser
Hypoparaanswers.eu - Hypoparaanswers.eu
Hypoparaanswers.eu is a resource centre for anyone seeking information about hypoparathyroidism (hypopara), a rare disease caused by low levels of parathyroid hormone (PTH) which affects blood calcium levels.
Ensemble contre FPI – Accompagner les patients atteints de Fibrose Pulmonaire Idiopathique
La fibrose pulmonaire idiopathique, ou FPI, est une maladie grave et relativement rare, qui s’attaque aux poumons et affecte la respiration au quotidien. Si vous, ou quelqu’un qui vous est cher, êtes affecté(e) per la FPI, informez-vous dès aujourd’hui sur la FPI.
Emily's Entourage
Emily's Entourage is a nonprofit organization that raises money and awareness to help find a cure for rare mutations of cystic fibrosis, a genetic disorder that generally affects a person's lungs and digestive system
Author: Jamie Markizon
Home
Latest news Read FIN’s latest updates, upcoming events and all news relating to Fabry Disease More News & Events What is Fabry Disease? Fabry disease is a rare, genetic condition which is estimated to affect
Author: Reejeel
What else blackswanfoundation.ch alternative websites
Comedy for a Cure 2021 - Tuberous Sclerosis Australia %
Tickets are on sale now! Please join us for an online comedy event that will harness the power of laughter to raise critically needed funds to help people affected by a rare and devastating disease, Tuberous Sclerosis Complex (TSC).
The Visual Snow Foundation – Raising awareness of Visual Snow Syndrome
Imagine dots flickering throughout your entire vision — 24/7 — without a cure. Visual Snow Syndrome ('VS') is a rare but devastating neurological condition that can affect an individual’s vision, hearing, and cognitive functioning.
PSC Partners Seeking a Cure | Education, Research & Treatment
PSC Partners Seeking a Cure provides education and support to people directly affected by this rare liver disease. Learn about primary sclerosing cholangitis and how we’re striving to find treatments and a cure.
Home | Scleroderma Canada
Scleroderma Canada is a CRA registered national charity serving the Canadian scleroderma community. We are the national advocate for those affected by this rare and difficult disease since 1999. We work collaboratively with regional and international organizations.
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Cherab Foundation – Help Give Our Cherubs a Smile and a Voice!
Is your child really just a late talker? Cherab Foundation is a small, grass roots nonprofit for children with neurological or genetic impairments that affect communication with a focus on autism and the rare orphan diagnosis apraxia. Our mission is providing evidence-based and integrative approache
Aniridia Europe | Looking out for the Aniridia Community
Aniridia Europe gathers people all over the continent We want to support people with aniridia in all countries and help them to share information and build useful networks in their own countries and abroad. In Your Country What's new Donate What is Aniridia? Aniridia is a very rare disease and every family affected …
Philippine Society for Orphan Disorders, Inc. – A pathway to support, resources and hope
LEARN MORE ABOUT NRDW 2021 OUR MISSION Our mission is to uphold the primary concerns and welfare of individuals with rare disorders by directly addressing, supporting and protecting their health and general well being ABOUT PSOD identified genetic origins Affect children
Author: Webmaster
Vinum Petri - Vinumpetri
Fine and rare wines, Rare und außergewöhnliche Weine, Vins rares et exceptionals
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Rare Earth Exploration, Rare Earth Oxides, Rare Earth Elements
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Metabolic Dietary Disorders Association (MDDA) is a national self-help group founded in 1996 by parents to support other families and individuals affected by Inborn Errors of Metabolism (IEMs). Rare genetic disorders including Phenylketonuria (PKU), Urea Cycle Disorders, Galactosaemia, Tyrosinaemia (TYRO). MDDA supports and represents families and individuals affected by a genetic Inborn Error of Metabolism whereby treatment involves a medically controlled diet.
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Author: Rare Bulldogs; Masters of Color
Unmasking Gender Inequity
COVID-19 is disproportionately affecting women in BC in every facet of their lives, and we’re on a mission to keep women safe and healthy — because what affects women affects us all.
Singapore Rare Books
Asian Rare Books Singapore Rare Books
Rare Diseases International
Rare Diseases International is the global alliance of people living with a rare disease of all nationalities across all rare diseases
Rare Disease News, Perspectives & Resources - Rare Disease Advisor
more news >> more features >> Rare Care Podcast Browse Rare Disease Advisor's engaging "Rare Care" podcast series, featuring
Author: Ryner Lai; MBBS
Canadian MPS Society for Mucopolysaccharide & Related Diseases – We believe in a brighter future for all Canadians affected by and with MPS
Support for families. Research for a cure. Our support and education programs assist those affected in managing the diagnosis and progression of these rare, often devastating, disorders. Funds raised through donations and special events help fund research that provides hope for a brighter future for all children born with lysosomal
Author: AdminBrandtopia
Home - XP Family Support Group
XERODERMA PIGMENTOSUM Also known as XP, is a rare inherited disease affecting both males and females. It causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, Xeroderma Pigmentosum can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of
Author: Xp-Admin
US Rare Coin Investments|Tom Pilitowski Rare Coins
US Rare Coin Investments Tom Pilitowski is a high end rare coin dealer since 1979. Provides complete information on rare coins, rare gold coins, early gold.
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Home - HEFA Rare Earth Canada Ltd.
A world supplier of rare earth products. The products of Hefa are divided into three groups, seven series and over fifty varieties. The main products include single rare earth oxide, rare earth chloride, rare earth carbonate, rare earth nitrate; rare earth fluoride, mixed rare earth oxide and all kinds of rare earth concentrates; single rare earth metal, battery level mischmetal, hydrogen storage powder; nickel-hydrogen cell and cell group, etc.
Author: WideHope Systems
Filière de santé Maladies Rares Maladies Rares Sensorielles
Filière de santé Maladies Rares Maladies Rares Sensorielles
Recto|Verso — Rare and Unusual Images from Bernett Penka Rare Books
Rare and Unusual Images from Bernett Penka Rare Books
Author: Melissa McCaffrey
Boli Rare - Platforma digitala comunitatii de boli rare
Platforma digitala comunitatii de boli rare on Boli Rare…
cmvins.fr
spécialistes en vins rares - fine & rare wines specialists
TCPアフェクション | TCP Affection
TCP Affection
Cleidocranial Dysplasia Resources & Connections | CCD Smiles
CCD Smiles Improving the lives of people with cleidocranial dysplasia through awareness, connections, support, education and research. What is CCD? Cleidocranial Dysplasia (CCD) is a rare condition that primarily affects the development of bones and teeth. Learn More Make Connections Find others with CCD in your state, follow us on Facebook and Instagram, and join […]
#WeWearStripes | Rare Disease Day 2021
We created a rare t-shirt to raise awareness among the general public because rare diseases are not so rare, and for the majority of them there is no cure.
Transforming Technologies
A Transforming Technology affects core values , priorities and basic belief system - affects allocation and expenditure of resources ... can affect behaviour, how one conducts oneself, how one relates to others.
Rare Records Vinyl and CDs From Around The World
Rare CDs , Rare Vinyl and Records and other collectables. Encore records stocks over 50,000 rare and limited edition cds and records at great prices. We ship our rare music worldwide.
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Cambridge Rare Disease Network - Cambridge Rare Disease Network
Author: Suzanne Morris
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Home – ConPlusUltra
Totalløsninger indenfor fiskeri - Kynde & Toft A/S
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Ærlig hudpleje i sin reneste form - Faaborg Pharma
Faaborg Pharma er baseret på ærlighed og gennemsigtighed, hvorfor alle etiketter viser præcis, hvad produkterne indeholder.
Museo della Carta
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Accueil - Terranum
Terranum offre une expertise en danger naturel, géologie, hydrologie, mesures lidar et insar, et développe des logiciels adaptés aux géosciences.
Accueil - TCI Engineering
Unterwaditzer – Unterwaditzer, Funktionstüren aus Holz,Tischlerei Berg im Drautal
Author: Eller Türen Möbel
Trang chủ
Công Ty TNHH TM Tân Thành tự hào khi được là người bạn đồng hành cùng bà con nông dân trong suốt chặng đường 25 năm vừa qua.
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Hotel Ouranoupolis Princess is a newly built accommodation complex, located at the entrance of Ouranoupolis in Halkidiki Greece,
Mreže za pakiranje, zaščitne in vrtne mreže – Maar – MAAR je sodobno proizvodno podjetje, ki se ukvarja s proizvodnjo visoko kvalitetnih mre
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Heka Dental - Designing and manufacturing dental care units is in our DNA
We are specialists in dental care units. We strive to create security and comfort for you, your team and your patients
Fremtidens elektronikmesse E-22 - Foredrag og netværk
Vi ses på E-22! Elektronikmessen vender stærkt tilbage i 2022, hvor du kan besøge E-22 fra den 30. august til
Hotel in the heart of Odense - Hotel Odeon
Et landsdækkende inspektions- og prøvetagningsfirma - Dan Inspektion
Dan Inspektion er et landsdækkende inspektions- og prøvetagningsfirma. Dan Inspektion varetager kvalitetsundersøgelser for danske og udenlandske kunder.
Главная RU - ALTUS
Аренда шатров, сдача в аренду контейнеров, сцены и ограждения, напольные покрытия, для государственных и коммерческих мероприятий. Аренда шатров, сдача в...
Whisky, Gin & Rom | Unikke produkter og smagninger
Hos Fadandel finder du et stort udvalg af unik whisky, gin og rom, samt whiskyfade som endnu ikke er aftappet. Besøg butikken på Voerladegård i Skanderborg
