raredisease.org.uk

Rare Disease UK - the National Alliance for People with Rare Diseases and All Who Support Them

You need to upgrade your Flash Player. Keep up to date with our work, follow us on Twitter. Or 'like' us on Facebook. Rare Disease Day 2015. Rare Disease page now on. Find out what's happening in your nation. Who's who at RDUK. The Northern Ireland Rare Disease Partnership. Annual reports and AGM papers. Write for our blog. Benefits of joining RDUK. Living with a Rare Disease. Experiences of Rare Diseases: An Insight from Patients and Families'. Stories from Patients and Families. Overview of the strategy.

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Rare Disease UK - the National Alliance for People with Rare Diseases and All Who Support Them | raredisease.org.uk Reviews

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You need to upgrade your Flash Player. Keep up to date with our work, follow us on Twitter. Or 'like' us on Facebook. Rare Disease Day 2015. Rare Disease page now on. Find out what's happening in your nation. Who's who at RDUK. The Northern Ireland Rare Disease Partnership. Annual reports and AGM papers. Write for our blog. Benefits of joining RDUK. Living with a Rare Disease. Experiences of Rare Diseases: An Insight from Patients and Families'. Stories from Patients and Families. Overview of the strategy.

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Rare Disease UK - the National Alliance for People with Rare Diseases and All Who Support Them | raredisease.org.uk Reviews

https://raredisease.org.uk

You need to upgrade your Flash Player. Keep up to date with our work, follow us on Twitter. Or 'like' us on Facebook. Rare Disease Day 2015. Rare Disease page now on. Find out what's happening in your nation. Who's who at RDUK. The Northern Ireland Rare Disease Partnership. Annual reports and AGM papers. Write for our blog. Benefits of joining RDUK. Living with a Rare Disease. Experiences of Rare Diseases: An Insight from Patients and Families'. Stories from Patients and Families. Overview of the strategy.

INTERNAL PAGES

raredisease.org.uk

1

Supporters

http://raredisease.org.uk/members.htm

What is a rare disease? Rare Disease UK (RDUK) has over 2,000 registered supporters including academics, clinicians, industry, individual members and patient organisations. For more information and to join RDUK please click here. Our industry supporters for 2016 are: Aegerion, Alexion, Amgen, Amicus Therapeutics, Bio Marin, Chiesi, CSL Behring, Genzyme, GlaxoSmithKline, Healx, Novartis, Pfizer, PTC Therapeutics, Raptor, Roche, Shire, Sigma-Tau Rare Disease, SOBI, UCB and Vertex. Alpha 1 UK Support Group.

2

Fundraise

http://raredisease.org.uk/fundraise.htm

What is a rare disease? Thank you for thinking about raising money to support Rare Disease UK’s (RDUK) work. There is no science to fundraising anyone can do it and there are endless ways of raising money. It just takes a little imagination, enthusiasm and determination! You can find lots of information about how to fundraise for RDUK in our Fundraising Pack. Or, here are few suggestions:. Take part in a challenge event,. Organise your own event or activity,. Make a collection,. Non-uniform and dress-dow...

3

Rare Disease UK

http://raredisease.org.uk/index.htm

What is a rare disease? Campaigning on behalf of all those affected by a rare condition. What is the UK Strategy for Rare Diseases? Where can I find information and support for my condition? How can I support Rare Disease UK? Latest from Rare Disease UK. Reconfiguration of UK Rare Disease Forum. Patient Empowerment Group calls for coordination in England. I have a rare condition called Lipid Lipase Deficiency, or LPLD. We are the national campaign for people with rare diseases and all who support them.

4

Communiqué Awards High commendation

http://raredisease.org.uk/communique.htm

What is a rare disease? Communiqué Awards High commendation. High commendation at the Communiqué Awards. In 2014 Rare Disease UK (RDUK) secured a high commendation at the Communiqué Awards. The high commendation was received for RDUK's successful campaign to secure a UK Strategy for Rare Diseases. For the 3.5 million affected by rare diseases in the UK who need health services that deliver better health outcomes. Launched in November 2013. This is what the judges had to say:. How do I find information ab...

5

Experiences of Rare Diseases: An Insight from Patients and Families (2010)

http://raredisease.org.uk/experiences-of-rare-diseases.htm

What is a rare disease? Experiences of Rare Diseases: An Insight from Patients and Families (2010). Experiences of Rare Diseases: An Insight from Patients and Families (2010). Over the summer of 2010, Rare Disease UK (RDUK) conducted a survey of patients’ and families’ experiences of living with a rare disease. The aim was to identify and better understand common issues and problems faced by those living with a rare disease. Our report, Experiences of Rare Diseases: An Insight from Patients and Families.

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wilsonsdisease.org.uk

WDSG-UK - Wilson's Disease Support Group (UK) - Official Website

http://wilsonsdisease.org.uk/index.asp

Gift Aid - Donations. WDSG-UK was granted charitable status by HMRC in 2010 and is recognised as a charitable company. As such, WDSG-UK is entitled to claim Gift Aid back on donations, where appropriate. If you wish to make a donation to WDSG-UK and to Gift Aid it, please complete this form. If you are at all interested, please join. Go to Membership Form. Join us on Facebook. Child Liver Disease Foundation. WDSG-UK - A support group for all. This is the official website. WDSG-UK was founded in the year ...

wilsonsdisease.org.uk

WDSG-UK - Wilson's Disease Support Group (UK) - Official Website

http://wilsonsdisease.org.uk/WDSG-P10.asp

Gift Aid - Donations. WDSG-UK was granted charitable status by HMRC in 2010 and is recognised as a charitable company. As such, WDSG-UK is entitled to claim Gift Aid back on donations, where appropriate. If you wish to make a donation to WDSG-UK and to Gift Aid it, please complete this form. If you are at all interested, please join. Go to Membership Form. Join us on Facebook. Child Liver Disease Foundation. The Wilson's Disease Support Group UK is not responsible for information and materials appearing ...

wilsonsdisease.org.uk

WDSG-UK - Wilson's Disease Support Group (UK) - Official Website

http://wilsonsdisease.org.uk/WDSG-P01.asp

Gift Aid - Donations. WDSG-UK was granted charitable status by HMRC in 2010 and is recognised as a charitable company. As such, WDSG-UK is entitled to claim Gift Aid back on donations, where appropriate. If you wish to make a donation to WDSG-UK and to Gift Aid it, please complete this form. If you are at all interested, please join. Go to Membership Form. Join us on Facebook. Child Liver Disease Foundation. WDSG-UK - A support group for all. Le groupe de soutien aux personnes atteintes de la maladie de ...

wilsonsdisease.org.uk

WDSG-UK - Wilson's Disease Support Group (UK) - Official Website

http://wilsonsdisease.org.uk/WDSG-P4.asp

Gift Aid - Donations. WDSG-UK was granted charitable status by HMRC in 2010 and is recognised as a charitable company. As such, WDSG-UK is entitled to claim Gift Aid back on donations, where appropriate. If you wish to make a donation to WDSG-UK and to Gift Aid it, please complete this form. If you are at all interested, please join. Go to Membership Form. Join us on Facebook. Child Liver Disease Foundation. Volume 15 - April 2015. Volume 14 - April 2014. Volume 13 - April 2013. Volume 12 - April 2012.

alfiemilne.org.uk

Tag Events - News & Events

http://www.alfiemilne.org.uk/news/tag/events

Team Alfie joins Aberdeen and Deeside Kiltwalk. November 17th, 2014 Posted in Fundraising. Alfie’s Trust is excited to be entering a team for the Aberdeen and Deeside Kiltwalk in June 2015. For more information about the event go to. Http:/ www.thekiltwalk.co.uk/events-fundraising/events/29-aberdeen-kiltwalk-2015. Registration is now open, please contact. On your marks and get set to join Team Alfie. September 29th, 2014 Posted in Fundraising. Balmoral Run 2013 Update. February 20th, 2013 Posted in Update.

alfiemilne.org.uk

Rare Disease Day 2015.... Did you know? - News & Events

http://www.alfiemilne.org.uk/news/2015/rare-disease-day-2015-did-you-know

Rare Disease Day 2015…. Did you know? February 27th, 2015 Posted in Update. The 28th of February marks Rare Disease Day 2015, which aims to increase awareness of diseases like Alfie’s. Did you know:. 1 in 17 people will be affected by a rare disease at some point in their life. This amounts to approximately 3.5 million people in the UK. 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. There are over 6,000 recognised rare diseases. Alfie Milne Trust...

inheritedpriondiseasesupport.org

News & Research Updates | Inherited Prion Disease Support Network

http://www.inheritedpriondiseasesupport.org/651673

Inherited Prion Disease Support Network. No results found for. About Inherited Prion Disease. News and Research Updates. News and Research Updates. National Prion Clinic (NPC) Open Day - 17th February 2015. Stuart and Anita will be attending this day with other people affected by IPD, we will report back here with any news. At Risk Day at the National Prion Clinic (NPC) - 25th March 2014. Unoffical notes from the day taken by Anita Thompson. Psychological effects and support. Dr Mead said he was keen to ...

inheritedpriondiseasesupport.org

Useful Links | Inherited Prion Disease Support Network

http://www.inheritedpriondiseasesupport.org/638210

Inherited Prion Disease Support Network. No results found for. About Inherited Prion Disease. News and Research Updates. Below are some links we hope you will find useful. We will continue to add to this page, please do let us know ( ipdsupportnetwork@hotmail.co.uk. If you have any recommendations you would like to add. The National Prion Clinic. The CJD Support Network. NHS Counselling and Genetic Counselling. NHS Choices Genetic Counselling Information. NPC support and Counselling Services. At the Nati...

orphan-reach.com

orphan reach™- A Rare Disease CRO for Orphan DrugsOrphan drug application, orphan drug designation

http://orphan-reach.com/rare-disease-focus/optimize-orphan-strategy

Note From The CEO. The orphan reach Team. Data Management & Biostatistics. Russia, Ukraine & Baltic Countries. Ndash; Note From The CEO. Ndash; The orphan reach Team. Ndash; Our Clients. Ndash; Why orphan reach. Ndash; Early Development. Ndash; Natural History. Ndash; Clinical Development. Ndash; – Project Management. Ndash; – Clinical Monitoring. Ndash; – Regulatory Affairs. Ndash; – Quality Assurance. Ndash; – Safety/Pharmacovigilance. Ndash; – Investigator Recruitment. Ndash; – Medical Writing. Ndash;...

orphan-reach.com

orphan reach™- A Rare Disease CRO for Orphan DrugsQuality Assurance - orphan reach™- A Rare Disease CRO for Orphan Drugs

http://orphan-reach.com/services-2/clinical-development/quality-assurance

Note From The CEO. The orphan reach Team. Data Management & Biostatistics. Russia, Ukraine & Baltic Countries. Ndash; Note From The CEO. Ndash; The orphan reach Team. Ndash; Our Clients. Ndash; Why orphan reach. Ndash; Early Development. Ndash; Natural History. Ndash; Clinical Development. Ndash; – Project Management. Ndash; – Clinical Monitoring. Ndash; – Regulatory Affairs. Ndash; – Quality Assurance. Ndash; – Safety/Pharmacovigilance. Ndash; – Investigator Recruitment. Ndash; – Medical Writing. Ndash;...

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Histio Spread The Word Find A Cure. Histiocytosis Find A Cure. Saturday, November 17, 2012. Consultation on the United Kingdom Plan For Rare Disease Northern Ireland. The Cavan Tommy Hoey Trust is shocked by the lack of responses to the United Kingdom Rare Disease Plan Northern Ireland Parties had the chance to give their views on how they see Rare Disease in Northern Ireland they failed the people in No. Northern Irland has and is falling short in health care of rare diseases and this is transferring th...

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Seltene Erkrankungen Salzburg

Die Erforschung seltener Erkrankungen und die damit verbundene Patientenbetreuung brauchen besondere Anforderungen. Mehr als 7.000 verschiedene seltene Krankheiten wurden bisher identifiziert, die das tägliche Leben von mehr als 30 Millionen Menschen allein in Europa direkt betreffen. In Salzburg findet der von der EU ins Leben gerufene Aktionstag jedes Jahr unter dem Motto. Bdquo;Gemeinsam für Selten“. Statt Von seltenen Erkrankungen spricht man, wenn davon weniger als 1 von 2000 Menschen betroffen sind.

raredisease.com.au

Awakening Australia to Rare Diseases

Awakening Australia to Rare Diseases: Global perspectives on establishing a coordinated approach to a national plan. Fremantle, Western Australia. Confirmed international speakers include. Domenica Taruscio, ICORD. Stephen Groft, NIH. Sharon Terry, Genetic Alliance. Segolene Ayme, INSERM (video presentation). Christophe Beroud, INSERM. Hanns Lochmuller, TREAT-NMD. Peter Saltonstall, NORD. Please download the Full Programme. Or the Exhibition Booking Form. The Office of Population Health Genomics and the ...

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Name Trade One - The #One Domain Traders and Resellers

raredisease.org

RareDisease.org — Home — Rare Disease Resources

Rare Disease dot org. List will also search for matching abbreviations and alternate names. Use a custom search. List will also search for matching abbreviations and alternate names. Only 343 of the 1,160 conditions in the search database have communities activated. We are processing them alphabetically. If you wish for one to be fast-tracked, please use the contact form. To let us know. If there is a rare disease we do not have in the search database, then please let us know about that, as well.

raredisease.org.uk

Rare Disease UK - the National Alliance for People with Rare Diseases and All Who Support Them

You need to upgrade your Flash Player. Keep up to date with our work, follow us on Twitter. Or 'like' us on Facebook. Rare Disease Day 2015. Rare Disease page now on. Find out what's happening in your nation. Who's who at RDUK. The Northern Ireland Rare Disease Partnership. Annual reports and AGM papers. Write for our blog. Benefits of joining RDUK. Living with a Rare Disease. Experiences of Rare Diseases: An Insight from Patients and Families'. Stories from Patients and Families. Overview of the strategy.

raredisease.powellcenter.med.ufl.edu

Rare Disease Research Laboratory » College of Medicine » University of Florida

A Phase 4, Open-Label, Prospective Study in Patients with Pompe Disease to Evaluate the Efficacy and Safety of Algulcosidase Alfa Produced at the 4000 L Scale. A Phase 4, Prospective, Multinational, Open-Label, Noninferiority Study of Alglucosidase Alfa Manufactured at the 160 L and 4000 L Scales in Treatment of Naive Patients with Infantile-Onset Pompe Disease. A Randomized, Double Blind, Placebo-Controlled, Phase 3 Trial of Tadalafil for Duchenne Muscular Dystrophy. Gene therapy treatment Glybera.

raredisease.skyrock.com

Blog de RareDisease - RareDisease - Skyrock.com

Mot de passe :. J'ai oublié mon mot de passe. Mise à jour :. Abonne-toi à mon blog! Quoi de neuf, mais en mieux. Ouesh. 9658; Tu me met dans ton qdn? Lien à vie, here. 9658; Une question? 9658; Chapitre 1, en cours d'écriture. 9658; Ma correctrice : ♣. Posté le samedi 30 mars 2013 13:02. Modifié le samedi 30 mars 2013 14:33. Ambel J'ai 16 ans, ouais, seulement. Je vivais le parfait amour avec mon petit copain, Johan mais, il m'a quitté ce. Pourquoi m'a t-elle choisis? N'oublie pas que les propos injurieu...

raredisease2011.org

Understanding Your Rights As a Citizen

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Coming Soon - Future home of something quite cool

Future home of something quite cool. If you're the site owner. To launch this site. If you are a visitor. Please check back soon.

rarediseaseasia.org

Home - Rare Disease Conference Asia 2016

17 - 19 November, 2016. Hotel Pullman Bangsar, Kuala Lumpur. World Through My Eyes. Airport and City Transfers. Putrajaya And Lake Cruise. Sunway Lagoon Theme Park. Aborigine Settlement And Elephant Sanctuary. Fireflies And Kuala Selangor. Garden And Park Tour. Deadline to submit posters - 16th October 2016. Click here to register online. No Tower 3 59200, 1, Jalan Taman Pantai,. Taman Bukit Pantai, 59100 Kuala Lumpur,. Wilayah Persekutuan Kuala Lumpur, Malaysia. Phone: 60 3-2298 1888.