RareVoice

🏆 Last chance to submit a RareVoice Nomination!

MaryO Interviews, Meetings and Conferences ,

 

1) Visit RareVoiceAwards.org

2) Review the 2021 RareVoice categories

3) Nominate an advocate who gave rare disease patients a voice on

Capitol Hill and in state government in 2020 and 2021.

4) Submit!

The RareVoice Awards recipients are chosen by a committee from nominations received from the rare disease community.

 
Nominations close August 27th, 2021
Federal Advocacy – Congressional Staff
Honors congressional staffers who have worked to create and enact policies for the rare disease community

Federal Advocacy – Patient/Organization
Honors advocates or organizations that have worked to create and pass federal legislation

State Advocacy – State Legislator
Honors state legislators who have worked to create and enact policies for the rare disease community

State Advocacy – Patient/Organization
Honors advocates or organizations that have worked to create and pass state legislation

Federal or State Advocacy by a Teenager
Honors teen advocates that have advocated for state or federal legislation

Diversity Empowerment – Patient/Organization
Honors advocates or organizations that empowered diverse voices in advocacy

Artist-to-Advocate
Honors individuals who have utilized their artwork to advocate for federal or state legislation
For information about sponsorship, please contact Elissa Taylor, etaylor@everylifefoundation.org
EveryLife Foundation For Rare Diseases
1012 14th Street, NW, Suite 500 | Washington, District of Columbia 20005
202-697-7273 | info@everylifefoundation.org

＄Growth Hormone Study Opportunity

MaryO Interviews, Meetings and Conferences, What do you think? , ,

 

Here’s your chance to make your voice heard on Growth Hormone Issues.

Anyone interested would sign up with Rare Patient Voice using the CushingsHelp referral Link. You would then get an email invite to the actual study.
Study Opportunity for Idiopathic Short Stature (ISS) Caregivers
This is a 30 min online survey and Compensation is $50
Please sign up at the link below for more information or to see if you qualify
https://rarepatientvoice.com/CushingsHelp/

✍️ Sign Up and Enjoy Patient Benefits

MaryO Can You Help? , , , , , ,

 

Sign Up and Enjoy Patient Benefits

To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards.

Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information.  It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information.

At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories!

Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey.

Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year.

We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years!

Register here!

 

Nominations Now Open for RareVoice Awards

MaryO Interviews, Meetings and Conferences , , , ,

rare-voice

Rare Disease Legislative Advocates is pleased to open nominations for the 5th Annual RareVoice Awards, a celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government.

Wednesday, November 16, 2016
Arena Stage in Washington, DC

If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination.

RareVoice Award nominations are open to the public.  We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders and political advocates in their state and our nation. We have nominations open for the following categories: Congressional Staff, Patient Advocate or Patient Organization (at the state or federal level), and Government Agency Staff.

Deadline to submit nominations is July 31, 2016.