Join CheckOrphan in raising awareness of rare diseases around the world!

Join CheckOrphan in raising awareness of rare diseases around the world! 

Today, the last day in February, is Rare Disease Day 2016! This year the slogan is ‘Join us in making the voice of rare diseases heard’.

Smiling Girl with Hands Covered in Paint

Smiling Girl with Hands Covered in Paint — Image by © Royalty-Free/Corbis

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People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation. Join the rare disease community and make the impact of rare diseases known.

 

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:

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Thank you for being a part of the solution!

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"I Challeng Rob" Win an iPad 3 4 categories and many prizes click to learn more

Join the “I Challenge Rob” contest and support rare diseases

Are YOU up for a Rare Challenge and a chance to win an Apple iPad 3? (Launching in March)

Or if you are a company, organization, academia or celebrity/politician/sports figure you can win prizes too!

My name is Rob Derham, Founder and President of CheckOrphan (501c3 non profit).  Are you ready to make a difference for RARE DISEASES by challenging me “Rob”?

From February 14 – March 17 in honor of World Rare Disease Day (February 29):  If your network of people can raise more donations than all other participants in that period – then you will win an Apple iPad 3 and be highlighted in the news!!

Entry Categories

  • Private Individuals – Apple iPad 3 Contest
  • Celebrities, Politicians, Nobility, Sports Figures Category
  • Company Category – Logo on CheckOrphan
  • Organization – Logo on CheckOrphan
  • Academia – Logo on CheckOrphan

Get started – How  “I Challenge Rob” Works

  • IMPORTANT:
    • Private Individuals
      • Become a Champion and make a donation of $1 or more, or Sponsor a Rare Disease Page.
      • During the payment process, in Step 3, click on the circle “Yes, I want to win an iPad 3”.
      •  Then enter the name you want to use as a Challenger in the contest in the box below. This can be your real name or a code name ( (Ex. Mister Network) and finish the payment process.
      • Contact your network of family, friends, social media, work colleagues and others and give them your name.


    • Entities
      • Become a Champion and make a donation of $1, or more or Sponsor a Rare Disease Page.
      • In Step 3 of the payment process, when you add the name and link for the company, this will enter you in the contest once your payment is complete.
      • Contact your network of family, friends, social media, work colleagues.
  • All donations are tax-deductible.

Tips:

  • Use Facebook to create an event and invite all your friends or fans (entities)
  • Use as many social media platforms available to get the message out and to thank your network once they donate.
  • Persuade your company or organization to support you by matching whatever funds you raise through your network with your name as the challenger.
  • Create a video and put it in social media
  • Concentrate first on 10 people who will really know well and ask them to try and set a goal to get 10 people from their network
  • Then look at people who always forward you emails. Ask them to join in this great cause and to refer you!!
  • Email campaign
    • Start with a personal email to all your contacts individually
    • Use some of the facts about rare diseases below
    • Add links in your email to the videos that show how your network can donate with you as the challenger
    • Then use MailChimp to give them updates on a weekly basis throughout February with friendly reminders to show their support for you and rare diseases
    • Include educational and persuasive videos from CheckOrphan’s video archive
    • Build momentum as March 17 approaches

Prizes

If your network raises the most funds through any combination of donations or rare disease page sponsors , you will win the following:

Private Individuals

  • iPad 3
  • News article about your success in raising awareness
  • Free access/attendance to a rare disease conference

Celebrity / Politician / Nobility / Sports Figure Category

  • Personal video on CheckOrphan that appears in all news articles for one month (optional)
  • Key note address at a Rare Disease Conference (optional)
  • News Article on CheckOrphan

Entities (One Winner from each of the 4 Categories mentioned above)

  • Your logo linking to your homepage at the top of every page on CheckOrphan for one month
  • News article about your entity

Rules

  • Any sexist, racist or vulgar referral names will be removed and you will be disqualified. Please, be considerate. Rare diseases are a very serious issue for millions of people whose lives are devastated by them.
  • No cheating, but fair creativity is encouraged
  • You cannot use “I Challenge Rob” to promote products, religion, politics and so forth, but you CAN use it to promote CheckOrphan and rare diseases
  • Neither I nor CheckOrphan is responsible for any taxes incurred if you win

How “I Challenge Rob” Started

The “I Challenge Rob” campaign unfolded after talking with some friends about how we can make a further impact for rare disease. A couple of them responded to my challenge by offering to raise more funds through their network of people than through mine. With each of us having a passion for rare disease awareness and wanting to make a difference in the rare community, the concept of “I Challenge Rob” was created.

About Rare Diseases:

As the Founder of CheckOrphan, I am deeply affected by patients, researchers and many others in the rare disease community who are neglected by the media and society due to the fact that individually, rare diseases do not affect a lot of people. However the reality and results of isolation and neglect to communicate the needs of the rare community greatly impacts the care and treatment options available to those whose life is changed forever by a rare disease.

IMPACT – facts about rare diseases

  • 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 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

CHECKORPHAN

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 their lives.  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 The Campaign Funds Be Used?

  • CheckOrphan promises to keep the information and ability to submit content-free for all
  • Over 95% of funds go directly into producing what you see on CheckOrphan
  • CheckOrphan will provide more content through more partnerships
  • New projects:
    • Global Rare Disease Registry
    • Science Journalism Program
    • Professional Working/Collaboration Platform for the rare disease community

Thank you for joining the cause!