Make the most out of CheckOrphan

Here we explain all you can do at checkorphan.org in order to make the most out of our services.

News

Stay up to date. A very important feature of CheckOrphan’s platform is the daily news. CheckOrphan is the largest source on the web for rare diseases. Every day we comprise news involving the rare disease community from a great variety of sources and post them on our website.

Expand your network. Send your content to the following email addresses and we will publish them on our website and/or blog:

  • News articles and press releases to news@checkorphan.org
  • Opinion pieces to rare.diseases@checkorphan.org (attn: Blog)
  • Videos to rare.diseases@checkorphan.org

The news articles and press releases will be published on the next edition of our daily Newsletter and reach hundreds of people.

Daily Newsletter

Subscribe and receive our free newsletter every day.

Event Calendar

Submit your events to CheckOrphan to help attract more attendees. Also contact us at rare.diseases@checkrphan.org about our free media partnership to help promote your event more effectively.

Databases

Find more information about a rare disease you are interested in here. CheckOrphan’s rare disease database has nearly 7000 rare diseases. Through each page, we offer information regarding the diseases’ symptoms, available treatments, causes, etc.  Each disease page is also linked to related news, events and research.

Learn more about a rare disease here.

Treatment Database

CheckOrphan also has organizations and treatment databases.

Companies can add their products or update a product page in the treatment section of our website. This section is a window to find treatment options for various diseases.

Link Network – Companies, Patient Organizations, Hospitals, Research Centers and more

Enter your company, association, hospital, clinic, or research institute for more visibility. Here you can submit information about your work and be part of CheckOrphan’s network.

Support & Connect

A great way to support this cause is by Sponsoring a Rare Disease Page or donating any given amount and Become a Champion. Your support makes a real difference.

Where do your donations go?

Image

We are also very active in different social media platforms. Connect with us to expand our network and create awareness about rare diseases among your friends too.

FB buttontwitter buttongoogle+ buttonlinkedin buttonYouTube icon button

Projects & Campaigns

At CheckOrphan, we keep moving and evolving. Be a part of it! We are currently working on Make a RareIMPACT, an ongoing campaign to get as many Rare Disease Pages as possible sponsored.

Make a RareIMPACT

Make a RareIMPACT with CheckOrphan by Sponsoring a Rare Disease or by Becoming a Champion – find out more below:

GOAL

Twice a month CheckOrphan will be spotlighting 2 disease areas and suggest 20 rare diseases from each disease area.

This is where you come in. We need you to help us sponsor 40 rare disease pages a month. The pages contain valuable information for patients, caregivers and physicians, and we need to keep them up and running.

WHY RARE DISEASES

Although individually the 7000+ rare diseases are rare, collectively about 1 in 10 has a rare disease. In those terms, rare is actually common and deserves proportional attention due to the numbers and economic drain these diseases cause on families and society.

CHECKORPHAN’S ROLE

Information is empowering – that is why CheckOrphan aggregates news and information about rare diseases. No other Internet platform makes more news, events, videos, research studies, clinical trials and additional information available to anyone and for free. Help us offer the world more!

TWO WAYS TO MAKE A RareIMPACT

Sponsor a Rare Disease – for less than 54 cents a day you can give a rare disease of your choice a voice

Become a Champion – donate any given amount and become a Champion!

All donations are tax-deductible as CheckOrphan is a registered 501(c)3 in the US and retains a similar status in Switzerland.

SPREAD THE WORD

Thank you for your support. We hope your friends and network is just as supportive. We would love to have them involved, too. Here are some ways you may want to involve them:

  • Use Facebook to create an event and invite all your friends to Sponsor a Rare Disease or Become a Champion
  • Let your friends and family know on the other social media platforms you use (Twitter, LinkedIn, Instagram, Pinterest, Foursquare, YouTube, etc.) that you donated and ask them to do the same.
  • Persuade your company or organization to be socially responsible and invite other employees to match your donation.
  • Create a video and put it in social media
  • Send emails to people you know who will care and ask them them to match your donation
  • Share this page

DISEASE AREA SPOTLIGHT

Twice a month CheckOrphan will spotlight a disease area and will randomly pick 20 rare diseases in that disease area for everyone to sponsor. But you don’t have to limit yourself to these suggestions; the more the merrier.

Current Disease Area – RARE HEART DISEASES: 

Familial dilated CardiomyopathyDilated cardiomyopathy,  Congenital heart blockBrugada syndrome,  Congenital heart septum defectKawasaki syndromeEisenmenger syndromeHypoplastic left heart syndromeAortic coarctationCardioauditory syndrome of Sanchez CascosTricuspid atresiaComplete atrioventricular canalCardiac diverticulumAtrial myxoma- familialLong QT syndrome type 1Wolff-Parkinson-White syndromeAortic supravalvular stenosisAtrial fibrillation- familial 1Bidirectional tachycardiaHis bundle tachycardia 

First Disease Area – RARE NEUROLOGICAL DISEASES:

Charcot Marie Tooth Disease, Chronic inflammatory demyelinating polyneuropathy, Diffuse Systemic Sclerosis, Encephalocele, Guillain–Barré Syndrome, Idiopathic basal ganglia calcification – childhood onset, Klippel Feil syndrome dominant type, Lafora Disease, Menkes Syndrome, Refsum Disease – infantile form, Spinocerebellar Ataxia 1, Amyotrophic Lateral Sclerosis type 2, Multiple-system Atrophy, Fragile X Syndrome, Friedreich Ataxia, Frontotemporal Dementia, Creutzfeld-Jakob Disease, Choreo-acanthocytosis, Hallervorden-Spatz Disease, Dandy Walker Syndrome

Second Disease Area – RARE CANCERS:

Small non-cleaved cell lymphomaAcute lymphoblastic leukemiaBurkitt’s lymphoma, Central nervous system lymphoma- primaryBone CancerLynch cancer family syndrome 2Metastatic squamous neck cancer with occult primaryAcinic cell carcinomaFollicular lymphomaBasal cell carcinoma- multipleAdenosarcoma of the uterusFibrosarcomaHepatocellular carcinomaLarge B cell diffuse lymphomaAcral lentiginous melanomaHodgkin lymphoma- childhoodLymphoblastic lymphomaChoriocarcinoma, Metastatic insulinomaAcute monoblastic leukemia 

Third Disease Area – RARE AUTOIMMUNE DISEASES:

Autoimmune HepatitisAntisynthetase syndromeAutoimmune myocarditis, Juvenile dermatomyositisChurg-Strauss syndromeAddison’s diseaseAutoimmune hemolytic anemiaAmyotrophic lateral sclerosis (ALS)Sjogren’s syndrome- juvenile- secondary to autoimmune diseaseBerger DiseaseDianzani autoimmune lymphoproliferative syndromeVasculitis- autoimmuneWegener’s granulomatosisAutoimmune progesterone dermatitisAllergic autoimmune thyroiditisAutoimmune enteropathy, Idiopathic pulmonary fibrosisTolosa-Hunt syndrome (THS)Susac’s syndromeAutoimmune oophoritis

RARE DISEASE FACTS

The following are just a few facts about the impact of rare diseases globally:

  • There are roughly 7000 rare diseases and less than 5% have a treatment or cure
  • Nearly 1 in every 10 people has a rare disease
  • About 70% of rare diseases affect infants and children – most of whom will never make it past their teens
  • In the US and the EU alone there are over 60 million people living with a rare disease
  • Diagnosis of a rare disease typically takes 2-3 years, with an average of 2 or 3 misdiagnoses along that odyssey.
  • Rare diseases are an enormous social and economic challenge for society and quite often, a rare diagnosis leaves families in financial despair

That’s why we need YOUR voice! The Rare Disease Community needs the power of communication and knowledge to make a difference in the health of all of our lives. Why all of our lives? Because by solving rare diseases, it gives knowledge and insight to more common diseases, which leads to better treatments for common diseases as well.

CheckOrphan gives everyone the opportunity to communicate what they are doing for the rare disease community by allowing them to submit news, videos, links, events and more. CheckOrphan is solely dedicated to promoting and informing the world about their needs and offering unique solutions that help them along their path to a cure and a better future for us all.

How Will RareIMPACT Funds Be Used?

CheckOrphan is a certified non-profit and we need your help to continue offering free information and expanding what we offer. Here is our commitment:

icons donations blog

Thank you for being a part of the solution!