NAMSE (@namse_info) Twitter Following • TwiCopy

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VulvaKarzinom

@vulvakarzinom

VulvaKarzinom - SHG e.V.

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Rare Disease Day

@rarediseaseday

29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay

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Rare Diseases

@checkorphan

CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs

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Juergen M. Beith

@jotembe

Gründer von „Thalassämiehilfe ohne Grenzen e.V.“, Ex-Berliner, begeisterter Vater / Großvater, Hobbykoch, Lebens- und Unternehmensberater

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MoebiusSyndromeFdn

@moebiussyndrome

We are the Home for the Moebius community. Moebius syndrome is a rare neurological condition causing facial paralysis. Follow to learn more about our cause!

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The Sturge-Weber Foundation

@sturgeweber

Embracing our uniqueness. We may be rare, but we're also one in a million! Awareness and support for those living with SWS, KTS, PWB, Glaucoma, Seizures.

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Michel Arriens (er/he)

@rollerundich

📣 Social Media & Kampagnen @innn_it 💪 Vorstand & Presse @bkmf ♿️ Aktivist & Speaker für #Inklusion & #Barrierefreiheit 💬 #NazisRaus 🗑️

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National Organization for Rare Disorders (NORD)

@rarediseases

National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.

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Phelan-McDermid Syndrome Foundation

@phelan_mcdermid

Official site of the Phelan-McDermid Syndrome Foundation. We support families and fund research. #PMS #PMSF #raredisease #specialneeds #pmsfad

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EU Medicines Agency

@ema_news

Latest news from the European Medicines Agency, the European Union agency responsible for the evaluation and supervision of medicines. RTs ≠ endorsement.

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Leukaemie-Online.de

@leukade

Gemeinnütziger Verein & Wissensdrehscheibe für #Leukämie|Patient:innen, Angehörige und Interessierte mit Fokus auf #CML, #CLL, #AML, #ALL und andere.

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NPUK

@niemannpickuk

Niemann-Pick UK is a charity providing support to those affected by Niemann-Pick Disease a group of rare, inherited, life-limiting diseases.

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World Orphan Drug Congress USA

@orphanconf

Get regular updates on #WorldOrphanUSA! April 22-24, 2025 | Boston Convention & Exhibition Center 👉 Register here: terrapinn.com/bookwodc_tw

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PA_Gesundheit

@pa_gesundheit

Presseagentur Gesundheit – am Puls der Gesundheitspolitik – es twittert unser Redakteur Christoph Starke

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PCOS Foundation

@pcosfoundation

The PCOS Foundation helps women with Polycystic Ovarian Syndrome (PCOS) by providing education, support and awareness activities.

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Niemann-Pick C Fund

@npcfund

NPCF was organized in Dec 2008 in order to raise awareness of Niemann-Pick Type C disease, research, and support for affected family's/individuals. It's FATAL.

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MFSH e.V.

@patientenorg

Die Morbus Fabry Selbsthilfegruppe MFSH hat sich zum Ziel gesetzt, die medizinisch-soziale Versorgung von Morbus FabryPatienten und ihren Angehörigen zu fördern

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Lipödem Hilfe e.V.

@lipoedemhilfeev

Lipödem Hilfe Deutschland e.V. Wir helfen und beraten Menschen in Deutschland, die an Lipödem erkrankt sind. Nähere Infos unter: lipoedem-hilfe-ev.de

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PSR Orphan Experts (now Ergomed)

@psrorphan

We’ve moved! PSR Orphan Experts is now Ergomed. To stay updated on future news, please follow us on the Ergomed Twitter page at twitter.com/ErgomedPLC

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Rare Disease UK

@rarediseaseuk

National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.

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Junge Selbsthilfe

@nakos_jung

Die junge Seite der NAKOS (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen) – gefördert von der KNAPPSCHAFT

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VHL Alliance

@vhlalliance

We are a non-profit support organization for patients and families affected by von Hippel-Lindau disease (VHL).

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PIP-UK

@polandsyndromep

Poland Syndrome Charity facebook.com/pip.uk.org Poland Syndrome is a rare birth difference affecting hands and chest.

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Project Scleroderma

@pscleroderma

Project Scleroderma's mission is to raise the level of scleroderma awareness and to help support the patient community as they cope with this autoimmune disease

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Lisa Braun 💎

@braun_lisa

Journalistin Gesundheitspolitik, pa-gesundheit.de gerechte-gesundheit.de

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Beyond the Diagnosis

@beyondthedx

Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.

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Dravet Syndrome UK

@dravetuk

We are dedicated to improving the lives of children and adults living with Dravet Syndrome, a rare epilepsy, through medical research, education and support.

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SRUK | Scleroderma & Raynaud's UK

@wearesruk

Scleroderma & Raynaud’s UK is the only charity dedicated to improving the lives of people affected by scleroderma and Raynaud’s.

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Beacon for Rare Diseases

@rarebeacon

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

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Rare Disease Report

@raredr

Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: tinyurl.com/RareDRPodcast, hosted by @GiulianaGrossi

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Klippel-Feil Syndrome Freedom

@kfs_freedom

Conquer a rare skeletal disease. Congenital fusion of cervical spine. Organs, nerves, muscles. 🗝 Research | Educate | Empower | Advocate #Genetic #Neuro #Pain

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KiDS22q11

@kids22q11

KiDS-22q11 e.V. ist eine gemeinnützige Organisation, die sich für Menschen mit dem Deletionssyndrom 22q11 und deren Angehörige einsetzt.

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Medizinredaktion

@medicuz_de

Gesundheit und Medizin sind unsere Themen. Es twittert Dr. Th.Gerlach - Zahnarzt, Oralchirurg, Medizinjournalist. medicuz.de

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Rare Disease Team

@raredxresearch

A Canadian research team focusing on rare disease policy.

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Action for XP

@actionforxp

Follow @ ActionforXP; improving lives of patients and families affected by the rare and incurable condition Xeroderma Pigmentosum (XP).

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ShwachmanDiamondAmer

@shwachmandiamon

Shwachman-Diamond America (SDA) is a 501(c)(3) non-profit organization dedicated to raising money for Shwachman-Diamond Syndrome research and education.

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Rare Diseases South Africa

@rarediseasessa

We're bridging the gap to improved quality of life, for a better tomorrow, for the #1in15 South Africans affected by rare diseases.

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KAKS

@kaksstiftung

Offizielle Twitterstimme v. KAKS KinderAugenkrebsStiftung. Hilfe für // Help for #retinoblastoma #survivors kinderaugenkrebsstiftung.de

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PSP-Gesellschaft

@pspgesellschaft

Selbsthilfeorganisation für Menschen mit Progressiver Supranukleärer Blickparese (PSP) und anderen atypischen Parkinson-Erkrankungen

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Lost Voices Stiftung

@lvstiftung

Die Stiftung fördert seit 2012 dringend benötigte Forschung zu #MECFS u.a. an der Charité + der TUM und setzt sich für bessere Versorgung und Aufklärung ein.

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