rareconnect.org

Connecting Rare Disease Patients Globally - RareConnect

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publica

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Connecting Rare Disease Patients Globally - RareConnect | rareconnect.org Reviews

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RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publica

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Connecting Rare Disease Patients Globally - RareConnect | rareconnect.org Reviews

https://rareconnect.org

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publica

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blog.rareconnect.org

RareConnect Support & Capacity Building

Social media case studies. Updates to RareConnect.org. June 14, 2016. RareConnect webinar: How to start a Twit. Download the slides Descarga la presentación en ESPAÑOL. SPEAKERS: Rob Pleticha (@robpleticha), Online Community Manager RareConnect and . March 24, 2016. List of #RareDisease Hashtags. Hashtags make it easy to follow a conversation and unite a community around a particular rare disease, or just the #RareDisease topic in general. Here. November 18, 2015. Our experience with a crowdfunding campa.

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rareconnect.org

1

Alternating Hemiplegia (AHC), the Community - RareConnect

https://www.rareconnect.org/en/community/alternating-hemiplegia

Connecting rare disease patients globally. Search and join a community. Search or start a discussion. Living with a rare disease. Discuss with other patients. Welcome - Alternating Hemiplegia (AHC) Community. What is Alternating Hemiplegia (AHC)? Alternating hemiplegia (AHC) (also called alternating hemiplegia of childhood) is a rare neurological disorder. Source: Participating patient organizations visible below. Alternating Hemiplegia (AHC) Resources. Living with AHC - Kathleen. Published 5 days ago.

2

Ehlers-Danlos Syndrome (EDS), the Community - RareConnect

https://www.rareconnect.org/en/community/ehlers-danlos-syndrome

Connecting rare disease patients globally. Search and join a community. Search or start a discussion. Living with a rare disease. Discuss with other patients. Welcome - Ehlers-Danlos Syndrome (EDS) Community. What is Ehlers-Danlos Syndrome (EDS)? Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder characterized by joint hypermobility, skin hyper extensibility and abnormal wound healing. Source: Participating patient organizations visible below. Ehlers-Danlos Syndrome (EDS) Resources.

3

L'emiplegia alternante (EA), la Comunità - RareConnect

https://www.rareconnect.org/it/community/l-emiplegia-alternante

Mettere in contatto le persone affette da malattie rare. Cerca e aggiungi una comunità. Cerca o avvia una discussione. Pagina iniziale della comunità. Vivere con una malattia rara. Discuti con altri pazienti. L'emiplegia alternante (EA). Pagina iniziale della comunità. Benvenuto - Comunità L'emiplegia alternante (EA). Che cos'è L'emiplegia alternante (EA)? Lemiplegia alternante dellinfanzia (EA) è una rara malattia dello sviluppo neurologico. L'emiplegia alternante (EA) Risorse. Altre storie dei membri.

4

Ipertensione polmonare forum - RareConnect

https://www.rareconnect.org/it/community/pulmonary-hypertension/forum

Mettere in contatto le persone affette da malattie rare. Cerca e aggiungi una comunità. Cerca o avvia una discussione. Pagina iniziale della comunità. Vivere con una malattia rara. Discuti con altri pazienti. Conosci, discuti e supporta altri pazienti o famiglie che vivono con la Ipertensione polmonare. Partecipa ai gruppi di discussione. Contribuisci agli argomenti, oppure condividi con noi i tuoi pensieri. Inizia una discussione ora (devi aver eseguito l'accesso). Per mandare un argomento. I was also t...

5

l’Hémiplégie Alternante (HAE) la communauté - RareConnect

https://www.rareconnect.org/fr/community/l-hemiplegie-alternante

Communautés de malades atteints de maladies rares. Chercher ou ajouter communauté. Chercher ou créer une discussion. Accueil de la communauté. Vivre avec une maladie. Discuter avec d'autres patients. Accueil de la communauté. Bienvenue Communauté l’Hémiplégie Alternante (HAE). Qu'est-ce que l’Hémiplégie Alternante (HAE)? Le syndrome de l’Hémiplégie Alternante est une maladie neurologique rare. Source: associations de patients participantes visibles ci-dessous. Ressource l’Hémiplégie Alternante (HAE).

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ghr.nlm.nih.gov

Resources - Genetics Home Reference

https://ghr.nlm.nih.gov/glossary=dihydrotestosterone

Skip to main content. Your Guide to Understanding Genetic Conditions. Help Me Understand Genetics. Each of the following categories provides links to useful genetics resources on the web. Ask a Geneticist (Stanford University at The Tech Museum). Cancer Genetics Services Directory (National Cancer Institute). Contact a Family (UK). Find a Genetic Counselor (National Society of Genetic Counselors). Genetic and Rare Diseases Information Center (GARD). Global Genes: RARE Toolkits. Lupus Foundation of America.

hesaonline.org

Misdiagnosis - Hashimoto's Encephalopathy SREAT Alliance

http://www.hesaonline.org/hesreat-101/misdiagnosis

Understanding the Brain and the Immune System. Disability Benefits in the US, UK, and Canada. Filing an Insurance Appeal. Tips for the Undiagnosed. The Second Edition of "Understanding Hashimoto's Encephalopathy" is coming soon. You can learn more about HE/SREAT with us on Facebook, Twitter, Google , and more . I believe you.". Misdiagnosis in HE/SREAT is common due to the lack of information about this serious and potentially life threatening condition. 8211; Dr. Josep Dalmau. The Autoimmune Encephaliti...

hesaonline.org

Tips for the Undiagnosed - Hashimoto's Encephalopathy SREAT Alliance

http://www.hesaonline.org/tips-for-the-undiagnosed

Understanding the Brain and the Immune System. Disability Benefits in the US, UK, and Canada. Filing an Insurance Appeal. Tips for the Undiagnosed. The Second Edition of "Understanding Hashimoto's Encephalopathy" is coming soon. You can learn more about HE/SREAT with us on Facebook, Twitter, Google , and more . I believe you.". Laquo; How to Find a Specialist. Tips for the Undiagnosed. June 6, 2015. Connecting Rare Disease Patients Globally". Alone we are rare. Together we are strong. ". Provides informa...

mynormal.ca

My Normal | storytelling for rare disease health: Case for More Storytelling

http://www.mynormal.ca/2014/06/case-for-more-storytelling.html

My Normal storytelling for rare disease health. Thursday, June 19, 2014. Case for More Storytelling. A convincing case for storytelling from Our Better World. An exciting storytelling showcase initiative of the Singapore International Foundation. Subscribe to: Post Comments (Atom). Promoting a diversity of storytelling voices to spread new awareness, understanding, and hope about living with a rare disease. Winners of the 2016 Cox Prize for Rare Compassion Announced. First Annual Kalanithi Fiction Award.

mynormal.ca

My Normal | storytelling for rare disease health: Storytelling Tip - November 17

http://www.mynormal.ca/2014/11/storytelling-tip-november-17.html

My Normal storytelling for rare disease health. Monday, November 17, 2014. Storytelling Tip - November 17. A good rare disease story is both personal and educational. It explains the disease enough and in a way that the general public can understand. It does not necessarily gloss over the facts and couch everything in terms of hope. It is honest. It is personal.". Sarah E. Kucharski. Writer and founder of FMD Chat - Fibromuscular Dysplasia Support. Sarah E. Kucharski. Subscribe to: Post Comments (Atom).

ahcfe.eu

AHC Federation of Europe | ATP1A3 SYMPOSIUM, WASHINGTON DC 27-29 August 2015

http://www.ahcfe.eu/2015/07/atp1a3-symposium-washington-dc-27-29-august-2015

AHC family day in the Nederlands. HUMAN TIMEBOMBS previewed in Washington, DC. ATP1A3 SYMPOSIUM, WASHINGTON DC 27-29 August 2015. July 12, 2015. Middot; Add Comment. For the official website. The Federation was founded on The International day of rare disease on the 28th. of February of 2013.

ahcfe.eu

AHC Federation of Europe | AHC

http://www.ahcfe.eu/ahc

WHAT IS ALTERNATING HEMIPLEGIA OF CHILDHOOD (AHC)? AHC is short for Alternating Hemiplegia of Childhood. Plegia refers to forms of paralysis of the body and or limbs, Hemi adds the scale of half the entire body to it and Alternating indicates that the forms of paralysis may change from one side of the body to the other. Childhood means that the disease is most often diagnosed during childhood. AHC is a very rare neurological disorder with only about 800 diagnosed patients. Water bathing and swimming.

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