End Denials: 2026 Illinois Rare Disease Community Bulletin by Maria G Pollock RPT

Meet ‚Ria Rare‘

mariapollock67 — 2023-02-13 17:25:14 UTC

I am a Chicago zebra - a person with rare diseases: Teddy is my custom-made corset that helps me fight pain. I live with a connective tissue disorder and altered drug metabolism.

[Trigger warning] Pain from surgeries left me with post-traumatic stress disorder: I lost my ability to read, and I couldn’t even finish watching a commercial.

Other people shared their healthcare struggles with me and I started advocating for people with complex, unique, rare and exceptional conditions (c.u.r.e. patients): We visited Illinois legislators to talk with them about the excess of denied prescriptions and care.

I have worked as a professional educator and piano technician. I have been a volunteer community organizer for over 20 years. My current involvement is as a patient support group leader and advocate. I also organize awareness campaigns.

Right now, I am in the middle of a masters degree at Northeastern Illinois University. I earned my teaching degree at the University of Ludwigsburg, Germany. I have also been trained in leadership by Weightwatchers International and the U.S. Pain Foundation.

telehealth - let‘s keep that option for everybody and across state borders
provider availability/provider networks - create mandates and incentives to provide care in Illinois
insurance coverage/insurance networks for rare disease patients - more oversight, public patient/provider compensation fund?
health equity for rare disease patients: does not exist and I care
education and outreach about rare disease in Illinois: Organize ice-cream socials in multiple locations this summer
passion: social justice, community, music
strengths: wit, grit and guts
struggles: finding qualified care, fighting the ‚label‘

Illinois Rare Disease Commission Public Meetings

mariapollock67 — 2023-02-14 14:34:30 UTC

Illinois RDC Calendar 2025

Meetings are generally on the third Wednesday of the month, unless there is a state holiday:

Wed 15 January 2025 from noon to 1 pm CST: Speakers/Posters/Asks for Rare Disease Day

TBA: Action Day: Distributing Flyers for Rare Disease Day in Springfield, IL

Wed 19 February 2025 from noon to 1 pm CST

Illinois Rare Disease Day:

Tue 4 March 2025 5 pm - 9 pm Opening Ceremony/Awards: State House Inn Conference Room

Wed 5 March 2025 8 am - 10 am Breakfast with Legislators, Stratton Building, Springfield, IL

9 am to 10:30 am, Commission Meeting - Stratton Building/online

Wed 16 April 2025 from noon to 1 pm CST: Focus Topics 2025/Statewide survey/Medicaid provider/patients

Wed 21 May 2025 from noon to 1 pm CST: Focus Topic 1

Wed 18 June 2025 from noon to 1 pm CST: Focus Topic 2

Wed 16 July 2025 from noon to 1 pm CST - tentatively in person in Chicago, IL,with ice-cream social

Wed 20 August 2025 from noon to 1 pm CST: Report on Illinois Medicaid Reform & PBMs

Wed 17 September 2025 from noon to 1 pm CST: Innovative Therapies & Research

Wed 15 October 2025 from noon to 1 pm CST: Newborn Screening/Genetic Counseling

Wed 19 November 2025 from noon to 1 pm CST: Annual Report 2025

Wed 18 December 2025 from noon to 1 pm CST: Year Recap/Planning for 2026

The Illinois RDC is charged with providing recommendations to the General Assembly regarding

(1) Prescription drugs and innovative therapies

(2) Legislation to improve care and treatment

(3) Expand and improve newborn screening

(4) Other concerns.

Hearing Horses: Every Fourth is a Zebra

mariapollock67 — 2023-03-07 15:51:58 UTC

Occam's razor (also known as the 'law of parsimony') is a philosophical tool for 'shaving off' unlikely explanations. Essentially, when faced with competing explanations for the same phenomenon, the simplest is likely the correct one.

https://datasmart.ash.harvard.edu/news/article/when-you-hear-hooves-think-horse-not-zebra-1079

Data collected by the EveryLife Foundation show that Rare Diseases together, are more common than diabetes, heart disease, or stroke.

MFTD waiver approved

mariapollock67 — 2023-03-23 16:29:22 UTC

https://emails.uofi.uic.edu/newsletter/62/953815062.html

New regulations provide relief for families with medically fragile children depending on technical equipment.

Now nighttime care givers are compensated.

Update: Waiver delayed - not yet posted for comment period to be implemented by 1/1/2025

Roll With It

mariapollock67 — 2023-03-24 01:16:47 UTC

Podcast by Petra Petty, living with cerebral palsy
Cerebral palsy affects 1 in 345, and is not rare.
https://spotify.link/QSpdcQlSpyb

Specialized Care For Children

mariapollock67 — 2023-03-24 01:27:33 UTC

Through University of Illinois at Chicago
This site serves children and their families who are on Medicaid. Could this site also become a Center for Rare Disease?
What help do children and families get who do not qualify for Medicaid?
https://dscc.uic.edu/

New York Rare Disease Work Group

mariapollock67 — 2023-03-24 01:50:30 UTC

https://health.ny.gov/diseases/rare_disease_workgroup/

Healthcare Bureau of the Illinois Attorney General

mariapollock67 — 2023-03-24 09:23:24 UTC

https://illinoisattorneygeneral.gov/File-A-Complaint/index

The Health Care Bureau Can Help You With:

Billing disputes
Denial of coverage
Denial of treatment as not medically necessary
Partial payments on claims
Unfair insurance practices
False or misleading health care advertising
Difficulty navigating the health insurance appeals process

The Health Care Bureau’s toll-free hotline, 1-877-305-5145 (TTY 1-800-964-3013)

Multiple Myeloma Research Fund

mariapollock67 — 2023-03-26 18:39:19 UTC

5K Run Fundraiser
https://give.themmrf.org/event/2023-mmrf-chicago-walk-run/e451814

GARD

mariapollock67 — 2023-03-26 18:43:33 UTC

Genetic and Rare Disease Information Center
by the National Institutes of Health (NIH)
https://rarediseases.info.nih.gov/

Virtual VEDS/LDS/Marfans Conference 2025

mariapollock67 — 2023-04-04 13:48:11 UTC

13 - 15 July 2025

https://marfan.org/2023/07/25/announcing-atlanta-conference-2025-virtual-global-conference-2024/

Children’s Tumor Foundation

mariapollock67 — 2023-04-06 00:47:18 UTC

Neurofibromatosis affects about 4,000 people in Illinois (1 in 3,000 people). Ria’s neighbor is one of them.

https://www.ctf.org/understanding-nf/nf1

Mucopolysaccharide Diseases

mariapollock67 — 2023-04-06 00:54:20 UTC

About 120 people in Illinois (1 in 100,000) live with a form of MPS.

https://mpssociety.org/learn/diseases/mps-i/

Charles River Rare Disease Research

mariapollock67 — 2023-04-06 01:04:43 UTC

Approaches to research and drug development for rare diseases. Charles River Labs have multiple locations in Illinois and throughout the world.

https://www.criver.com/products-services/discovery-services/pharmacology-studies/rare-disease-studies?region=3696

Sarnoff Center for Jewish Genetics

mariapollock67 — 2023-04-06 01:09:58 UTC

Chicago-based center that provides genetic screening and counseling services.

https://www.jewishgenetics.org/

Chion Foundation

mariapollock67 — 2023-04-06 01:16:04 UTC

Off-label use of Pitolisant in management of Prader-Willi syndrome, on-going study.

https://www.chionfoundation.org/

Rare & Ready Coalition

mariapollock67 — 2023-04-06 01:28:21 UTC

Advocacy foundation that focuses on speeding access to therapies for rare diseases.

https://www.rareandready.org/about/

Illinois Sickle Cell Disease Association

mariapollock67 — 2023-04-06 03:31:47 UTC

Foundation provides resources, education and advocacy for people living with sickles cell anemia.

https://www.sicklecelldisease-illinois.org/

Spastic Paraplegia Foundation

mariapollock67 — 2023-04-06 03:35:54 UTC

The Spastic Paraplegia Foundation is dedicated to advancing research and finding cures for two groups of closely related, progressive neurological disorders: Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP).

https://sp-foundation.org/

Share 4 Rare

mariapollock67 — 2023-04-06 03:46:51 UTC

A European alliance to foster advocacy and research

https://www.share4rare.org/

Global Genes

mariapollock67 — 2023-04-06 03:51:33 UTC

California-based organization for Rare Diseases
https://globalgenes.org/

Lurie Children’s Hospital

mariapollock67 — 2023-04-06 03:55:12 UTC

Resource page for rare and genetic disorders
https://www.luriechildrens.org/en/blog/about-rare-diseases-and-genetic-disorders/

Genetic Alliance

mariapollock67 — 2023-04-06 04:02:12 UTC

Offers training in creating registries and aligning research
https://geneticalliance.org/registries/bootcamp/registry-services

iBio

mariapollock67 — 2023-04-06 04:05:32 UTC

Illinois alliance of pharmaceutical and biomedical research companies
https://ibio.org/

Rare Disease Legislative Advocates

mariapollock67 — 2023-04-06 15:38:15 UTC

by the EveryLife Foundation

Read about Federal and State initiatives and policy updates:

April 2023 Newsletter: https://everylifefoundation.salsalabs.org/april2023rdlanewsletter?wvpId=d77df660-c742-4a66-9f89-34873772abde

IL SB 0067 New Born-Screening Act Amendment

mariapollock67 — 2023-04-06 15:48:17 UTC

by FiscalNote

https://app.fiscalnote.com/share/bill?url=254c4a4beb3d669953fa9e2a6b10cc55

Bill proposes to cover metachromatic leukodystrophy
https://ilga.gov/legislation/BillStatus.asp?GA=103&SessionID=112&DocTypeID=SB&DocNum=67

Family Justice Center

mariapollock67 — 2023-04-07 23:25:38 UTC

An Illinois based non-profit organization that supports families with wrongful child abuse allegations, provides resources and legal support.

https://www.famjustice.org/about

Healthcare Issues?

mariapollock67 — 2023-05-19 23:30:00 UTC

Insurance billing issues should be referred to the Illinois Department of Insurance at 877-527-9431 or 866-445-5364. To file a complaint online go to https://mc.insurance.illinois.gov/messagecenter.nsf
Possible health care fraud should be referred to the Attorney General’s Health Care Fraud Unit at 877-305-5145 (TTY 800- 964-3013) or fax 312-793-0802. To file a complaint online go to http://illinoisattorneygeneral.gov/consumers/hcform.pdf
Licensed personnel issues should be addressed to the Illinois Department of Financial and Professional Regulation at 312-814-6910. To file a complaint online go to https://www.idfpr.com/Admin/Complaints.asp
Mental health issues occurring and DHS-operated facilities can be referred to the Illinois Department of Human Services at 1-800-368-1463 or (312) 815-3784.
Medicare Billing Problems can be referred to a Medicare Customer Services Representative at 800-633-4227 or to the Department of Insurance at 800-548-9034.
Quality of care issues can be referred to the Central Complaint Registry Hotline at 800-252 4343 or 800-547-0466 for TTY only. The file a complaint use the form at https://dph.illinois.gov/content/dam/soi/en/web/idph/forms/topics-services/health-care-regulation/complaints/healthcarefacilitycomplaintform20210625.pdf
Other healthcare issues can be addressed to the Illinois Attorney General at 1-877-305-5145. A complaint form is available at https://illinoisattorneygeneral.gov/Page-Attachments/hcform.pdf

Intravenous Immunoglobulin

mariapollock67 — 2023-05-19 23:36:27 UTC

New Medicaid Work Requirement? - Take Action

mariapollock67 — 2023-05-20 04:46:58 UTC

H.R.2811 - Limit, Save, Grow Act of 2023 passed the House. It allows states to disenroll any Medicaid recipient for a month when federal funding is not available, e.g. during a government shut down. How will disabled people who require around the clock assistance pay for care?

In addition, the act would require Medicaid recipients to provide at least 80 hours per month of “community engagement, work, or participation in a work program”.

To be exempt from this requirement a doctor’s letter is needed. This is difficult for people with rare diseases whose condition is often misunderstood, misdiagnosed or undiagnosed. How will people afford to get such a letter if they cannot afford healthcare in the first place?

On behalf of your neighbors who are too sick to work, please consider signing this letter to President Biden as soon as you are able:

https://rarediseases.org/driving-policy/take-action/#/191

Illinois Adds Metachromatic Leukodystrophy to Newborn Screening

mariapollock67 — 2023-05-21 07:00:06 UTC

In May 2023 the Illinois General Assembly added screening for metachromatic leukodystrophy (MLD) to the newborn screening: https://www.ilga.gov/legislation/103/SB/10300SB0067eng.htm

The assay will first be introduced in a pilot program, and is expected to be available statewide in two years.
https://mldnewbornscreening.org

Research Match

mariapollock67 — 2023-06-16 03:39:55 UTC

ResearchMatch is a nonprofit program funded by the National Institutes of Health (NIH). It helps to connect people interested in research studies with researchers from top medical centers across the U.S.

https://www.researchmatch.org/

Illinois Care Far to Par

mariapollock67 — 2023-06-23 12:51:48 UTC

Agency for Healthcare Research and Quality finds sore spots in quality of healthcare in Illinois compared to other states.

https://datatools.ahrq.gov/nhqdr?_gl=1*1j2ugky*_ga*MzY4NDg0NTEyLjE2ODcxODIzNDM.*_ga_1NPT56LE7J*MTY4NzUyNDA2Mi4yLjEuMTY4NzUyNDEzNC41NS4wLjA.

Find Clinical Trials

mariapollock67 — 2023-06-23 13:07:00 UTC

Find studies about your condition and connect with research centers. Study results of completed studies may also be posted. Select “Interventional” studies if you are looking for treatement options.

https://clinicaltrials.gov/

Developmental Disability Support

mariapollock67 — 2023-06-25 01:40:18 UTC

through the Illinois Department of Human Services

Screening, Advocacy & Service Coordination
Residential Service
Day Care Service
Other Services

https://www.dhs.state.il.us/page.aspx?item=115717

Illinois Chapter of Uplifting Athletes

mariapollock67 — 2023-07-03 02:27:16 UTC

Uplifting Athletes raise awareness and funds for rare diseases.
https://www.upliftingathletes.org/chapter/illinois

Petition for Galactosemia Treatment

mariapollock67 — 2023-08-14 02:54:22 UTC

Please sign the petition to expedite a treatment for galactosemia patients.

Illinois Department of Financial and Professional Regulations

mariapollock67 — 2023-09-18 15:22:48 UTC

If you feel you have received unprofessional care from a provider in Illinois please speak up: https://idfpr.illinois.gov/content/dam/soi/en/web/idfpr/admin/dpr/f1717proreg.pdf

Drug Shortages Look-Up

mariapollock67 — 2023-09-18 18:42:52 UTC

The Food and Drug Administration collects data on drug shortages. Find out if your medication is affected: https://www.fda.gov/drugs/drug-safety-and-availability

IL/MO U.S. Pain Foundation Support Group

mariapollock67 — 2023-09-22 01:32:18 UTC

The U.S. Pain Foundation offers a free online support group for residents of Illinois and Missouri via Zoom. Preregister at this link: https://painconnection.org/illinois-support-group/

The group meets twice a month on the 1st and 3rd Thursday of each month from 5:30-6:30pm CST via Zoom at

https://us02web.zoom.us/j/86166543203?pwd=QksxMG41bHVqbGdJTWZCYmpEMnVuZz09

Toolbox - for pain patients

mariapollock67 — 2023-09-22 01:43:42 UTC

by the U.S. Pain Foundation
Register for webinars or scroll to the bottom to watch the recordings of previous topics:

https://uspainfoundation.org/building-your-toolbox/

Invisible Illness Story - told and reflected

mariapollock67 — 2023-10-17 21:20:57 UTC

A personal and literary view from within invisible auto-immune disease by Yale author Meghan O’Rourke. Link to purchase: https://a.co/d/f6Dgzuc

Rare Disease Center of Excellence

mariapollock67 — 2023-10-17 21:25:05 UTC

Northwestern University, Lurie’s Childrens’ Hospital, Chicago (both):
Allison Goetsch Weisman, MS, CGC - (312) 227 - 6120
Website in development

Rare & Ready

mariapollock67 — 2023-10-17 21:46:16 UTC

Coalition network that connects small patient support organizations to be a big voice - led by Kari Lato at https://www.rareandready.org

nLorem

mariapollock67 — 2023-10-17 22:00:46 UTC

supports patients with identified genetic disorders to develop treatments. https://www.nlorem.org/access-treatment/qualifications-for-treatment/

Pediatric Palliative Care

mariapollock67 — 2023-10-23 15:46:45 UTC

Connects parents, providers to resources. Call 312 741 1283. https://www.gippcc.org

Co-Pay Help

mariapollock67 — 2023-10-24 03:30:00 UTC

Medication and treatment should be a relief - not a burden: https://copays.org/

United Mitochondrial Disease Foundation

mariapollock67 — 2023-12-18 20:50:13 UTC

Mitochondrial diseases affect the body’s energy supply and cell cycle. Find support for diagnosis and care: https://www.UMDF.org

Division of Specialized Care for Children

mariapollock67 — 2024-01-04 15:58:56 UTC

Assists qualified families with coordination of care: https://dscc.uic.edu/

Illinois Department of Health and Human Services

mariapollock67 — 2024-01-04 16:02:54 UTC

Assists qualified individuals with coordination of care, rehab and insurance coverage: https://www.dhs.state.il.us

Illinois Department of Healthcare and Family Services

mariapollock67 — 2024-01-04 16:06:31 UTC

Apply for Medicaid and related services: https://hfs.illinois.gov/

Dispatch Health

mariapollock67 — 2024-01-06 19:45:23 UTC

Urgent care for homebound: https://www.dispatchhealth.com/locations/il/chicago/

Illinois Disability Rights Bureau

mariapollock67 — 2024-01-12 18:28:54 UTC

Complain about violations of your rights:

People with disabilities are entitled as a matter of law to fair and equal opportunities in all aspects of society. The Disability Rights Bureau enforces state and federal laws that protect the rights of people with disabilities in Illinois: https://ag.state.il.us/rights/disabilityrights.html

Why Women Have More Autoimmune Disease

mariapollock67 — 2024-02-04 16:54:43 UTC

New research links X-chromosome suppressing protein to increased risk for autoimmune disorders:

Illinois Rare Disease Day 4 + 5 March 2025

mariapollock67 — 2024-02-04 16:56:44 UTC

Early warning: The Illinois Rare Disease Community advocates for their needs in Springfield, IL on Tuesday 4 March and Wednesday 5 March 2025.

Fewer Children Maltreated

mariapollock67 — 2024-02-05 16:17:20 UTC

US data indicate that fewer children have been mistreated.

Pheochromocytoma

mariapollock67 — 2024-02-10 17:42:52 UTC

Adrenal tumors can affect cardiac function and become life-threatening. However, most are treatable. Virginia-based advocacy organization provides education and support.

Care over Cost

mariapollock67 — 2024-02-18 00:56:50 UTC

Share your story about insurance pre-authorizations and denials: https://careovercost.org

Propionic Acidemia

mariapollock67 — 2024-02-19 05:28:42 UTC

Community is still searching for a cure. Get connected with the Propionic Acidemia Foundation: https://www.pafoundation.com/wordpress/

Cure SMA

mariapollock67 — 2024-07-12 02:30:40 UTC

Spinal muscular atrophy (SMA) is a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking.

This group is based in Elk Grove Village, IL.

https://www.curesma.org/

Short Survey

mariapollock67 — 2024-08-29 22:12:59 UTC

Please participate in this 6 minute pilot survey:

Hermansky-Pudlak

mariapollock67 — 2024-10-21 15:07:32 UTC

A genetic metabolic disorder, characterized by albinism, visual impairment, and a platelet dysfunction that results in prolonged bleeding:

Chondrosarcoma

mariapollock67 — 2024-10-21 15:09:20 UTC

Rare bone and soft tissue cancer.

Immune Thrombocytopenia

mariapollock67 — 2024-10-21 15:18:45 UTC

Platelet Disorder Support Association has provider resources and a patient registry.

FDA Rare Disease Hub

mariapollock67 — 2024-10-28 18:06:44 UTC

This summer the heads of CBER (gene therapy and biologics division of FDA) and CBER (the drug division of the FDA) announced a new FDA Rare Disease Innovation Hub to Enhance and Advance Outcomes for Patients:

www.fda.gov/news-events/fda-voices/...

They recently had a public meeting (the first post-COVID rare disease in person meeting at the FDA) to listen to the Rare Disease communities perspective on how this hub should function. The day was captured as a webinar and can be seen here:

youtu.be/jHv53SQ1UtE?feature=shared

As part of this listening meeting, the FDA is seeking comment through an open docket at regulations.gov. Anyone is free to comment. The link below is where you can submit your comments (due October 31, 2024) to the FDA about the Rare Disease Innovation Hub.

www.regulations.gov/document/FDA-2024-N-3528-0001/...

-----------

Undiagnosed Diseases Network

mariapollock67 — 2024-11-04 14:41:01 UTC

Research center for mystery illnesses at Harvard School of Medicine: https://undiagnosed.hms.harvard.edu/

GARD - National Resources from the National Institute of Health

mariapollock67 — 2024-11-19 16:01:40 UTC

National Resource and Help Line for Genetic and Rare Diseases.

Take Action - Federal Rare Disease Legislation

mariapollock67 — 2024-12-10 15:46:46 UTC

Contact your federal legislators in Washington, D.C. to act on your behalf:

extend rare disease protections

https://t.congressweb.com/l/?YCXCGSCXEZXMWPO

Primary Biliary Colangitis & Rare Liver Diseases

mariapollock67 — 2024-12-23 16:10:09 UTC

Resources, support groups, and research opportunities.

Continuing Medical Education

mariapollock67 — 2024-12-23 16:15:46 UTC

https://primeinc.org

Continuing Medical Education

mariapollock67 — 2024-12-23 16:17:55 UTC

Find state-required CME programs:

https://primeinc.org/

Illinois Prescription Drug Advisory Board

mariapollock67 — 2024-12-28 16:43:23 UTC

meets on 9 January 2025 at 8:30 am via WebEx. Click the picture for Call-in information.

Donate Prescription & OTC Meds

mariapollock67 — 2025-01-02 21:05:13 UTC

https://www.ilrxdrugrepository.org/donation-sites

Illinois Assistive Technology Program

mariapollock67 — 2025-02-27 08:30:16 UTC

Electric lifts, adjustable beds, and more:

https://iltech.org/

Illinois Rare Disease Day 2025

mariapollock67 — 2025-02-27 09:16:06 UTC

actually, Night & Day

4 & 5 March 2025

Reserve your free ticket:

https://ibio.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F12504

Illinois Rare Disease Night & Day 2025

mariapollock67 — 2025-02-27 09:18:16 UTC

4 & 5 March 2025

Join patients, families, caregivers, and the entire rare disease community for this impactful event as we raise awareness and educate Illinois legislators about the challenges faced by our community.

March 4, 2025: Reception from 5-7 pm (Bloom Wine Bar & Florals, 2 S Old State Capitol Plaza, Springfield, IL 62701)
March 5, 2025: Rare Disease Day, Breakfast & Programming, 8 am - 2 pm (Illinois State Library Conference Room 403/404, 300 S. 2nd Street, Springfield, IL 62701)

Please make sure to register for EACH event you are able to attend. Reserve your free ticket:

https://ibio.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F12504

Illinois Mastcell Activation FB Group

mariapollock67 — 2025-03-05 14:15:25 UTC

Rare Patient Voice

mariapollock67 — 2025-03-22 01:10:23 UTC

Helping patients and caregivers. Sign up for clinical trials recruitment and referral programs.

Advocacy Webinar

mariapollock67 — 2025-05-26 13:33:59 UTC

State Representative LaPointe holds a webinar on how to get mental healthcare covered.

Cover My Mental Health

mariapollock67 — 2025-06-12 00:17:08 UTC

Founded by Joe Feldman this website provides guidance how to get coverage for your care: https://covermymentalhealth.org/

TIME: How Having a Baby is Changing

mariapollock67 — 2025-06-24 16:53:36 UTC

https://time.com/7278169/baby-screenings-newborn-changing-trump-administration/

Undiagnosed Diseases Network

mariapollock67 — 2025-07-07 14:08:03 UTC

A program of the National Institutes of Health. Apply for investigation and support: https://undiagnosed.hms.harvard.edu/participate/

Creutzfeld-Jacobs-Disease Chicago Conference

mariapollock67 — 2025-07-07 14:12:25 UTC

This year the CJD conference takes place in Chicago, IL. Register here: https://cjdfoundation.org/etn/2025-cjd-foundation-family-conference/

Pompe Townhall

mariapollock67 — 2025-10-09 13:08:01 UTC

Pompe Disease Alliance is holding a townhall to discuss budgeting impact on 25 October 2025 at 5 pm EST. Register: https://us02web.zoom.us/meeting/register/tgMcMC8aTLOV4ri0hz45LA

Patient Advocate Foundation

mariapollock67 — 2026-01-16 01:35:22 UTC

Assists with co-pays and access to care.

Illinois Rare Disease Commission

mariapollock67 — 2026-01-16 01:44:46 UTC

This board meets on the second Wednesday of the month. They hear the concerns of people with rare diseases in Illinois:

Wed 1/14/2026

Wed 2/11/2026

Wed 3/11/2026

Wed 4/8/2026

Wed 5/13/2026

Wed 6/10/2026

Wed 7/8/2026

Wed 8/12/2026

Wed 9/9/2026

Wed 10/14/2026

Wed 11/11/2026

Wed 12/9/2026

Illinois Rare Disease Alliance

mariapollock67 — 2026-01-16 01:47:56 UTC

Individually, we are RARE

Together, we are MIGHTY

Vascular Ehlers-Danlos Syndrome 911

mariapollock67 — 2026-01-23 02:52:35 UTC

Life-saving directives

The Arc of Illinois

mariapollock67 — 2026-01-26 19:06:14 UTC

for families with medically complex and technology-dependent children

Neurofibromatosis Midwest

mariapollock67 — 2026-01-26 19:07:54 UTC

Support and resources for people living with neurofibromatosis

ADA Dx

mariapollock67 — 2026-01-29 17:47:41 UTC

Symptom checker app, can shorten time to a diagnosis!

FindZebra

mariapollock67 — 2026-01-29 17:52:00 UTC

Rare Disease Case Study Finder:

Phenomizer

mariapollock67 — 2026-01-29 18:01:09 UTC

Connects Human Phenotype Ontologies (HPOs) - to zero in on a correct diagnosis. Downloadable software.

Rare Disease Night & Day

mariapollock67 — 2026-01-31 02:01:26 UTC

at the Capitol in Springfield, IL

24/25 March 2026

Join Us - Register (free): https://www.illinoisrare.com/newsevents

Rare Care

mariapollock67 — 2026-02-02 23:44:11 UTC

How Prior Authorization is delaying and preventing timely care for rare disease patients.

360IgNS

mariapollock67 — 2026-02-07 20:33:31 UTC

7 - 8 March 2026 Virtual Conference for Education and Support for Patients on Ig Therapy and Biologics

Food Allergy Registry

mariapollock67 — 2026-03-14 15:15:33 UTC

Help research by joining the food allergy registry

Dup15q

mariapollock67 — 2026-03-21 15:17:02 UTC

National Alliance for Dup15q families

Rarely Familiar Podcast

mariapollock67 — 2026-03-21 17:21:58 UTC

Minnesota-based podcast for rare disease families with educational resources and events calendar on their website.

File a Healthcare Complaint

mariapollock67 — 2026-03-24 21:48:53 UTC

Recorded by the Illinois Department of Public Health. Don‘t suffer in silence. Please share your issues so your government can fix them.

Illinois Rare Disease Advocacy

mariapollock67 — 2026-03-26 15:26:48 UTC

Facebook group for Illinois Rare Disease advocacy. See what is happening. Share your ideas and needs.

Medicaid Changes - Be Prepared

mariapollock67 — 2026-04-10 23:55:44 UTC

Resources to make sure you are staying covered.

Donate/Receive Prescriptions

mariapollock67 — 2026-04-19 12:06:17 UTC

Donate your unopened prescriptions that do not expire within 5 months. Request prescriptions when you are unable to afford them.

Donations for shipping are appreciated.

Economic Burden of RD

mariapollock67 — 2026-04-21 13:24:12 UTC

Study from 2022

Chicago Sickle Cell Conference

mariapollock67 — 2026-05-13 18:44:05 UTC

Join the Illinois Sickle Cell Association for a day of learning. Saturday 22 May 2026 in Chicago. Be part of a fantastic community to raise awareness and make cures possible!

Medical Debt Assistance

mariapollock67 — 2026-06-01 19:51:33 UTC

Illinois has a program to relieve medical debt that exceeds 5 % of your income. Apply.

Illinois Department of Disability and Guardianship Created

mariapollock67 — 2026-06-24 18:58:35 UTC

Trust for America’s Health: Caregivers

mariapollock67 — 2026-06-29 13:45:49 UTC

Read the brief about informal care and caregiver needs.

State of the Safety Net

mariapollock67 — 2026-07-02 14:29:33 UTC

Thursday 9 July 2026 at 9 am. Register for free.

Three leaders give insight on our Illinois safety net.

UniQure to seek FDA approval for Huntington’s disease

mariapollock67 — 2026-07-12 22:48:37 UTC

New FDA director reverses course on rare disease drug approvals.

Rare Across America: 10 - 21 August 2026

mariapollock67 — 2026-07-14 16:11:19 UTC